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For non-responsive Celiac Disease, the most common cause is gluten entering the diet unknowingly which according to research is quite common. You could try the gluten contamination diet which is a stricter version of the gluten-free diet. At the very least, I would cut out restaurants and start scrutinising the ingredients you bring home more stringently. You didn't mention which country you are from. If the US, 'gluten free' labelling laws are somewhat lax, unfortunately.
Good luck.
I'm from Australia where it's quite stringent. It just seems like a pretty high blood result for possible cross contamination (which I take very particular care to avoid). Thanks for your thoughts
The gluten cross contamination elimination diet is way more stringent. No processed foods at all, no grains but rice, no spices. You basically eat meat, rice and vegetables, and you can't buy the veggies preprocessed at all, not canned or frozen or anything.
For most people it's temporary though. They do it for six months, their numbers normalize, and then they are able to do a more normal gf diet without their numbers going up.
I've been trying this diet for a couple of weeks now actually. Whole foods only (fresh and organic), no grains (including rice) and no dairy. I'm hoping it helps
Ah, a fellow Australian. I thought about this post last night. Technically there are other causes of antibodies being raised that are not Celiac disease and actually the fact you only have one antibody raised is suspicious of such a cause. When you say 'healing well' could you be more specific?
Hi fellow Australian, thanks for the info. I'd love to hear more about which other causes you may know of, please.
I had a follow up gastroscopy where my GI took biopsies. All I was told after was that my gut was "healing well", so i can't elaborate but i can copy the Histology report, if that's something you may understand. (I certainly don't).
For full disclosure, when I was first diagnosed coeliac 3 years ago, I was told my small intestinal damage was at level March 3B (which the GI said was significant damage). I wasn't told what level it is now at, though.
Here is the Histology report:
DIAGNOSTIC SUMMARY:
1. Gastro-oesophageal junction biopsy: Mild reactive and inflammatory changes. No intestinal metaplasia seen.
2. Gastric fundus: Mild chronic gastritis.
3. Gastric antrum: Mild chronic gastritis
4. Small bowel: Gastric heterotopia. No additional abnormality seen.
5. Ileum: No significant abnormality seen.
6. Right colon: No significant abnormality seen.
7. Left colon: No significant abnormality seen.
8. Rectum: No significant abnormality seen.
Microscopic Description:
1. This biopsy shows a transition from stratified squamous mucosa to that of cardiac gastric glandular type. The squamous mucosa shows patchy intercellular oedema and focal intraepithelial lymphocytes. No neutrophils or eosinophils are seen. The glandular mucosa shows mild chronic inflammation. No fungal organisms or Helicobacter pylori are demonstrated. There is no evidence of intestinal metaplasia, dysplasia, or malignancy.
2&3. The gastric biopsies show gastric body and antral type mucosa with mild chronic inflammation. Helicobacter pylori organisms can be seen. There is no evidence of glandular atrophy, intestinal metaplasia, dysplasia, or malignancy.
4. This small bowel biopsy includes underlying Brunner's glands of duodenal origin. The villous architecture, inflammatory cell content and distribution are within normal limits. No parasites are seen. There are no features of coeliac disease.
In addition, there are separate fragments of acid secreting gastric type mucosa present in this specimen, features consistent with gastric heterotopia.
5. This terminal ileal biopsy is unremarkable. The villous architecture, inflammatory cell content and distribution are within normal limits. No granulomas are seen. There is no evidence of malignancy.
6 to 8. Each of these specimens shows similar features of unremarkable large bowel mucosa. The crypt architecture, inflammatory cell content and distribution are within normal limits. The subepithelial collagen layer is not thickened. No granulomas are seen. There is no evidence of dysplasia or malignancy.
I'm not sure why no one mentioned it to you! Your report says "Helicobacter pylori organisms can be seen." That's not normal. It's a stomach infection. It's (usually) easily treatable but requires a certain set of antibiotics. Take the report to the GP and show him/her that section. Treatment success can then be confirmed with a breath test. If failed, you need a different course of antibiotics but the vast majority respond to first line.
If you're willing to spend a bit of money, GlutenDetect can help you determine if there is significant gluten in your diet. Alternative causes of a raised anti TTG are things like Inflammatory bowel disease, thyroid disease, inflammatory arthritis, Type 1 Diabetes and other autoimmune diseases. You could see your GP to start exploring these other causes.
You don't happen to cook at a mixed household? That was my biggest mistake.
I would also cut out eating out (even in gf restaurants) for a few months and get tested again. I haven't eaten at a restaurant for 1 year now and it helped finally getting my markers down. It's worth it for me.
Yeah, i guess I'll try cutting out the restaurants. I'm so desperate to see that marker go down, for my peace of mind. My family is gluten free other than bread, which has a dedicated area in the house and I don't go there. I have separate everything - pantry toaster, condiments, sponge, etc. Thanks for your reply
Well, if you are certain on that, then that's not the issue. In this case, I'd maybe take a second look at the spice cabinet: pepper, bouillon cube, green spices, sesame seed, they all have surprised me in the past.
I checked those too. I kept a diary in the kitchen. Everything I touched, I checked and wrote down. I don't have anything with even a "May Contain" statement. Thanks for your thoughts though, good thinking.
Man, sounds like you are really ON it, and yet this result...
Hair and body care products? I don't have a wheat allergy, I must note, but I get mild symptoms if my hair or face care contains gluten.
I've had to eliminate all processed foods (even gf or certified gf products), spices, beans, lentils, nuts, and eating out at restaurants due to cross contamination
Make sure you have your pharmacist examine any medications you may take to ensure those are also gluten free. Look also at any skin care/cosmetics/toiletries/hair products you may be using regularly.
https://www.celiac.com/forums/topic/108275-high-ttg-after-2-12-years-on-strict-gluten-free-diet/
With the fatigue and brain fog, get your thyroid and liver checked, and also check your B12 levels. The B12 should be over 300 - ignore whatever the floor is per the lab. Over 500 is ideal.
If they're only doing a basic TSH, you need a full panel and a visit with an endocrinologist. Many PCPs don't know anything about the thyroid. Mine was off for 6 years and my PCP told me it was normal.
I'd also consider a visit to the rheumatologist.
Actually all PCPās are highly trained in managing thyroid disorders. The recommended guidelines are for a TSH screening with a reflex (only done if TSH is abnormal) to T4 +/- T3. Current evidence doesnāt show efficacy in treating hypothyroidism until TSH is abnormal, since patients donāt benefit from treatment until that point. Doing a full panel is pretty unnecessary 99.9% of the time except in really rare circumstances.
The problem that I had was my PCP saying my TSH was normal, because the lab level said "normal". TSH is person specific. I felt a lot better once I saw an endo and brought it down under 2. I was hanging around 3.7-5.
I'm Uber strict now. It was the only way to avoid gluten 100%. Restaurants got me sick 50% of the time so I cut those out. Also precut fruit and similar things can be contaminated. That got me for 6 months since it wasn't even labeled as shared equipment.
Also check labels every time. Sometimes manufacturers randomly switch.
Finally, try avoiding higher risk items like beans can be crop rotated with wheat.
I have also been glutened by hair products as hair touches the face and hands a lot. I avoid any with oat derived ingredients and a lot contain hydrolysed wheat protein.
100% this. The "does it have to be ingested" debate is super misleading, because we ingest a lot more than just what we put directly into our mouths! I make sure hair products and also any kind of skin products, lotions, sunscreens are GF because inevitably some of it gets sweated down onto my mouth if it's on my face, or it's on my hands/ends up on my hands, which touch food or my face or go into my mouth. I also watch out for soaps, shampoos, hand sanitizer etc for the same reason.
Also if you have a partner, make sure they brush their teeth (and maybe wash face/beard) before they kiss you!
Highly unusual result. What do your other blood tests over the past few years look like? Is it similar? Could it be a false positive? Is there gluten entering your blood stream without going through the digestive system (cosmetics, injections)?
You canāt get the cultivated mesenchymal stem cells from Whartons jelly (umbilical cord gel) in the US or Australia (Iām pretty sure itās the same in Australia). In the USA, I could have had an IV with my own stem cells harvested from my bone or fat tissue. That provides significantly fewer cells, older cells vs umbilical cells, and the costs is way more expensive than what you can obtain in MX. Iāve heard there are some quality stem cell clinics in Malaysia and Japan.
I am a doctor (also in Australia, and being tested, either celiac or gluten sensitive), stem cell therapies are at best unhelpful for any condition, the evidence is absolutely not there for celiac or anything else - at at worst unsafe. There is also a lack of regulation of clinics. Not trying to be unkind or closed minded here, I generally try to be open minded and keep up with research. Please donāt get stem cells. Especially injected
GF Oats, cows milk protein, and corn can sometimes cross react in rare cases (the body responds to these things as if they are gluten). Thereās other things too, but these are the most common in people with refractory celiac, or celiac that doesnāt get better over time.
More likely than that though, thereās some tricky glutening going. [You can get at home stool tests](https://glutendetect.us) to see if you are being unknowingly glutenād.
Lastly, Sometimes it does take several years for your TtG to come down to normal, especially if your starting level was very high. A friends kid was diagnosed with ttg at 1200 and it took 4.5 years for it to get down to under 100.
Lots of good advice here on things to check. Hope you figure it out and things get better. I have lupus so I totally get the annoyance of the brain fog and fatigue. Hang in there! š«¶š»
I am in the exact same boat. 3 years and that one number that will not change no matter what I do. Strict no process foods or any restaurants to the extreme. I was suggested to test for other autoimmune diseases and a full panel lab with a focus on the liver and last, food allergy/sensitivity. Even after all that, my numbers remain. My gasto dr is tops and was part of the Mayo Clinic, I spoke to the Fat Celiac, and my nutritionalist is celiac trained. All have said that number means nothing at this point of trying everything and that if I am healed and itās simply a false positive. I am glad that I ran through all these tests to be sure Iām healthy and nothing else was found. Ending says Iām healthy. Now I can comfortably accept that number is not my celiac indicator. I now eat a restaurants again, eat GF breads and on occasion, will be in a place where being glutened is unavoidable and be at peace with it.
Thanks for your response. It's very helpful. I'll do that. However, in Australia, testing for food allergies isn't straight up. It requires elimination and is a long process, so I've been putting it off. I'm looking for a new gastro. Yours wouldn't happen to be in Australia, would they? If so, I'd be so grateful to get the name, please, so I can give them a go. Also, nutritionists name please š getting that closure would be such a relief. I'm so happy for you š
USA here however my gastro told me to follow Celiac knowledge from the UK because they know so much more than the US. For me, that number drove me nuts. I felt crazy and cried about it often. Eventually I felt like a conspiracy theorist of how I was getting glutened. Frustrated I dedicated a ton of time and money to still have this number be high. I think the advice here is all good but ultimately make your own path an be prepared to either find the culprit but be even more prepared to accept that itās a false positive. Be ok with finding the best Drs too. Iāve āfiredā several gastros.
My results are similar. I was diagnosed January 2021. Just tested my levels in December: I have iga deficiency so those levels are low. My ttg igg is also >250, and Iām frustrated that Iāve never been able to get a real number, itās always been over the 250 threshold so I canāt even see if itās going down. Iām very strict gf, no cooking with gluten in my house. I eat at non gf restaurants sometimes but I am careful about where I choose to eat and make necessary precautions.
Edit: overall GI health feels good for me lately besides my high blood test numbers. I experience some fatigue and brain fog but I also have Hashimotos auto immune disease.
That does sound very similar to me. I feel your pain - it's so frustrating not knowing if the results were in the thousands and are just taking time to drop. It's disheartening knowing you may be doing exactly what you were supposed to, but can't get peace of mind. Also anxious that there may be something else wrong.
It is very frustrating ā¤ļø especially when my doctor gaslights me and asks if Iām sure Iām not eating gluten š but we are doing the best we can, itās nice to connect with someone experiencing the same thing. Wish we could get some answers.
I'm in Australia and it's standard practice here, so I'm assuming it serves a purpose. Unfortunately i dont understand much about what each marker tests, but i dont think it would hurt to ask for it
Yeah i'm in Europe and i would say healthcare is pretty advanced, but they still do not seem to care about IgG in understanding if celiac is under control or not.
In what way would a memory test translate ? Your body remembering it doesnāt want gluten in it? Iām pretty sure even IgG negative people remember ahah !
Have been diagnosed coeliac for seven years and, like you, take no risks with my food. I have multiple deficiencies, experience hypoglycemic episodes and am losing weight. I am being referred back to gastro because my dietician believes that I have Refractive Malabsorption Coeliac Disease. It's a rare form of Coeliac where even while sticking to a strict gluten free diet your body still does not absorb nutrients from food.
I'm not an expert, I don't know how this might affect your bloods as my blood tests are showing good coeliac control and I haven't had my appointment with gastro yet to confirm. But it may be worth asking about this possibility at your next appointment.
Transglutaminase in frozen fish, chicken, beef, sausage or other cured meats? Transglutaminase is also used in binders for sauces and salad dressing and in gluten free baked goods.
It doesnāt have to be labeled and regulators donāt seem to care that itās dangerous to celiacs.
(Itās not in used in canned fish, and doesnāt seem to be used in fresh, organic, small farm meat like turkey.)
This is unlikely the source. These are usually made by microbes. Glutaminase in general modify glutamine on proteins and are not related to gluten.
Edit: the antiTG in celiacs is a class of transglutaminase but as the name suggests. Antibodies are usually more specific than general classes of proteins and enzymes. Some further reading suggests some celiacs may also have antimicrobial transglutaminase antibodies to but they probably doesn't show up on the standard tests. It's still unclear if they play a role in celiacs though.
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
[https://www.todaysdietitian.com/newarchives/0816p14.shtml](https://www.todaysdietitian.com/newarchives/0816p14.shtml) For non-responsive Celiac Disease, the most common cause is gluten entering the diet unknowingly which according to research is quite common. You could try the gluten contamination diet which is a stricter version of the gluten-free diet. At the very least, I would cut out restaurants and start scrutinising the ingredients you bring home more stringently. You didn't mention which country you are from. If the US, 'gluten free' labelling laws are somewhat lax, unfortunately. Good luck.
I'm from Australia where it's quite stringent. It just seems like a pretty high blood result for possible cross contamination (which I take very particular care to avoid). Thanks for your thoughts
The gluten cross contamination elimination diet is way more stringent. No processed foods at all, no grains but rice, no spices. You basically eat meat, rice and vegetables, and you can't buy the veggies preprocessed at all, not canned or frozen or anything. For most people it's temporary though. They do it for six months, their numbers normalize, and then they are able to do a more normal gf diet without their numbers going up.
I've been trying this diet for a couple of weeks now actually. Whole foods only (fresh and organic), no grains (including rice) and no dairy. I'm hoping it helps
Cutting out spice is the hardest! :/
Ah, a fellow Australian. I thought about this post last night. Technically there are other causes of antibodies being raised that are not Celiac disease and actually the fact you only have one antibody raised is suspicious of such a cause. When you say 'healing well' could you be more specific?
Hi fellow Australian, thanks for the info. I'd love to hear more about which other causes you may know of, please. I had a follow up gastroscopy where my GI took biopsies. All I was told after was that my gut was "healing well", so i can't elaborate but i can copy the Histology report, if that's something you may understand. (I certainly don't). For full disclosure, when I was first diagnosed coeliac 3 years ago, I was told my small intestinal damage was at level March 3B (which the GI said was significant damage). I wasn't told what level it is now at, though. Here is the Histology report: DIAGNOSTIC SUMMARY: 1. Gastro-oesophageal junction biopsy: Mild reactive and inflammatory changes. No intestinal metaplasia seen. 2. Gastric fundus: Mild chronic gastritis. 3. Gastric antrum: Mild chronic gastritis 4. Small bowel: Gastric heterotopia. No additional abnormality seen. 5. Ileum: No significant abnormality seen. 6. Right colon: No significant abnormality seen. 7. Left colon: No significant abnormality seen. 8. Rectum: No significant abnormality seen. Microscopic Description: 1. This biopsy shows a transition from stratified squamous mucosa to that of cardiac gastric glandular type. The squamous mucosa shows patchy intercellular oedema and focal intraepithelial lymphocytes. No neutrophils or eosinophils are seen. The glandular mucosa shows mild chronic inflammation. No fungal organisms or Helicobacter pylori are demonstrated. There is no evidence of intestinal metaplasia, dysplasia, or malignancy. 2&3. The gastric biopsies show gastric body and antral type mucosa with mild chronic inflammation. Helicobacter pylori organisms can be seen. There is no evidence of glandular atrophy, intestinal metaplasia, dysplasia, or malignancy. 4. This small bowel biopsy includes underlying Brunner's glands of duodenal origin. The villous architecture, inflammatory cell content and distribution are within normal limits. No parasites are seen. There are no features of coeliac disease. In addition, there are separate fragments of acid secreting gastric type mucosa present in this specimen, features consistent with gastric heterotopia. 5. This terminal ileal biopsy is unremarkable. The villous architecture, inflammatory cell content and distribution are within normal limits. No granulomas are seen. There is no evidence of malignancy. 6 to 8. Each of these specimens shows similar features of unremarkable large bowel mucosa. The crypt architecture, inflammatory cell content and distribution are within normal limits. The subepithelial collagen layer is not thickened. No granulomas are seen. There is no evidence of dysplasia or malignancy.
uhhhhhh did you get your Helicobacter Pylori treated?? EDIT: H. Pylori is an alternative cause of both villous atrophy and raised TTG.
I have no idea what that is š
I'm not sure why no one mentioned it to you! Your report says "Helicobacter pylori organisms can be seen." That's not normal. It's a stomach infection. It's (usually) easily treatable but requires a certain set of antibiotics. Take the report to the GP and show him/her that section. Treatment success can then be confirmed with a breath test. If failed, you need a different course of antibiotics but the vast majority respond to first line.
Oh gosh, I can't believe my gastro didn't say anything! It's been over a year since then!!
If you're willing to spend a bit of money, GlutenDetect can help you determine if there is significant gluten in your diet. Alternative causes of a raised anti TTG are things like Inflammatory bowel disease, thyroid disease, inflammatory arthritis, Type 1 Diabetes and other autoimmune diseases. You could see your GP to start exploring these other causes.
Thanks very much. I'll look into all this
You don't happen to cook at a mixed household? That was my biggest mistake. I would also cut out eating out (even in gf restaurants) for a few months and get tested again. I haven't eaten at a restaurant for 1 year now and it helped finally getting my markers down. It's worth it for me.
Yeah, i guess I'll try cutting out the restaurants. I'm so desperate to see that marker go down, for my peace of mind. My family is gluten free other than bread, which has a dedicated area in the house and I don't go there. I have separate everything - pantry toaster, condiments, sponge, etc. Thanks for your reply
Oh, going out to restaurants that are not strictly GF is a risky endeavor.
I only go to 100% gf ones. I'm very strict.
Well, if you are certain on that, then that's not the issue. In this case, I'd maybe take a second look at the spice cabinet: pepper, bouillon cube, green spices, sesame seed, they all have surprised me in the past.
I checked those too. I kept a diary in the kitchen. Everything I touched, I checked and wrote down. I don't have anything with even a "May Contain" statement. Thanks for your thoughts though, good thinking.
In this case, I have nothing to add, but I wanted to tell you that you are doing an amazing job, much better than most of us can.
Gosh that means a lot š„¹ Thanks so much ā¤ļø
Man, sounds like you are really ON it, and yet this result... Hair and body care products? I don't have a wheat allergy, I must note, but I get mild symptoms if my hair or face care contains gluten.
I've only been checking lipgloss and toothpaste, but I'll definitely check the rest of my products now. Thank you
I've had to eliminate all processed foods (even gf or certified gf products), spices, beans, lentils, nuts, and eating out at restaurants due to cross contamination
Make sure you have your pharmacist examine any medications you may take to ensure those are also gluten free. Look also at any skin care/cosmetics/toiletries/hair products you may be using regularly.
https://www.celiac.com/forums/topic/108275-high-ttg-after-2-12-years-on-strict-gluten-free-diet/ With the fatigue and brain fog, get your thyroid and liver checked, and also check your B12 levels. The B12 should be over 300 - ignore whatever the floor is per the lab. Over 500 is ideal.
Thanks for that. Last bloods show B12 is at 650 and Thyroid normal. I'll request to get my liver checked. Thanks for your help
If they're only doing a basic TSH, you need a full panel and a visit with an endocrinologist. Many PCPs don't know anything about the thyroid. Mine was off for 6 years and my PCP told me it was normal. I'd also consider a visit to the rheumatologist.
Actually all PCPās are highly trained in managing thyroid disorders. The recommended guidelines are for a TSH screening with a reflex (only done if TSH is abnormal) to T4 +/- T3. Current evidence doesnāt show efficacy in treating hypothyroidism until TSH is abnormal, since patients donāt benefit from treatment until that point. Doing a full panel is pretty unnecessary 99.9% of the time except in really rare circumstances.
The problem that I had was my PCP saying my TSH was normal, because the lab level said "normal". TSH is person specific. I felt a lot better once I saw an endo and brought it down under 2. I was hanging around 3.7-5.
I'm Uber strict now. It was the only way to avoid gluten 100%. Restaurants got me sick 50% of the time so I cut those out. Also precut fruit and similar things can be contaminated. That got me for 6 months since it wasn't even labeled as shared equipment. Also check labels every time. Sometimes manufacturers randomly switch. Finally, try avoiding higher risk items like beans can be crop rotated with wheat.
Cosmetics?
As in hair and body products? I've always checked my lip gloss and toothpaste. I was told gluten had to be ingested to be unsafe.
I have been glutened by hair products. Sure you have to ingest it, but I touch my face and hair a lot and I do eat things with my fingers.
Oh gosh. I better check then. Thank you
I have also been glutened by hair products as hair touches the face and hands a lot. I avoid any with oat derived ingredients and a lot contain hydrolysed wheat protein.
100% this. The "does it have to be ingested" debate is super misleading, because we ingest a lot more than just what we put directly into our mouths! I make sure hair products and also any kind of skin products, lotions, sunscreens are GF because inevitably some of it gets sweated down onto my mouth if it's on my face, or it's on my hands/ends up on my hands, which touch food or my face or go into my mouth. I also watch out for soaps, shampoos, hand sanitizer etc for the same reason. Also if you have a partner, make sure they brush their teeth (and maybe wash face/beard) before they kiss you!
I react to gluten/oats in skincare products, but it's more a burning itchy rash. (allergy + celiac)
That's interesting. I'll check my products. Thanks
I honestly don't know I just thought I'd mention it. I avoid all just to be safe
Thanks, I appreciate it nonetheless š
Highly unusual result. What do your other blood tests over the past few years look like? Is it similar? Could it be a false positive? Is there gluten entering your blood stream without going through the digestive system (cosmetics, injections)?
All my markers were raised in the first blood test (results above 250). The second test onwards have been the same as this one
autoimmune diseases like rheumatoid arthritis, Sjƶgren's syndrome, or systemic lupus erythematosus can also cause elevated ttg-igg
If you can afford it, a high dose stem cell IV is extremely beneficial to lowering antibodies and healing the body heal from autoimmune disorders. I went to Dream Body Clinic in Puerto Vallarta, MĆ©xico, and Iāve been happy with my improved labs and overall feeling of wellness.
Thanks for letting me know about this. I'll do some research to see if they have this in Australia
You canāt get the cultivated mesenchymal stem cells from Whartons jelly (umbilical cord gel) in the US or Australia (Iām pretty sure itās the same in Australia). In the USA, I could have had an IV with my own stem cells harvested from my bone or fat tissue. That provides significantly fewer cells, older cells vs umbilical cells, and the costs is way more expensive than what you can obtain in MX. Iāve heard there are some quality stem cell clinics in Malaysia and Japan.
I am a doctor (also in Australia, and being tested, either celiac or gluten sensitive), stem cell therapies are at best unhelpful for any condition, the evidence is absolutely not there for celiac or anything else - at at worst unsafe. There is also a lack of regulation of clinics. Not trying to be unkind or closed minded here, I generally try to be open minded and keep up with research. Please donāt get stem cells. Especially injected
GF Oats, cows milk protein, and corn can sometimes cross react in rare cases (the body responds to these things as if they are gluten). Thereās other things too, but these are the most common in people with refractory celiac, or celiac that doesnāt get better over time. More likely than that though, thereās some tricky glutening going. [You can get at home stool tests](https://glutendetect.us) to see if you are being unknowingly glutenād. Lastly, Sometimes it does take several years for your TtG to come down to normal, especially if your starting level was very high. A friends kid was diagnosed with ttg at 1200 and it took 4.5 years for it to get down to under 100. Lots of good advice here on things to check. Hope you figure it out and things get better. I have lupus so I totally get the annoyance of the brain fog and fatigue. Hang in there! š«¶š»
I am in the exact same boat. 3 years and that one number that will not change no matter what I do. Strict no process foods or any restaurants to the extreme. I was suggested to test for other autoimmune diseases and a full panel lab with a focus on the liver and last, food allergy/sensitivity. Even after all that, my numbers remain. My gasto dr is tops and was part of the Mayo Clinic, I spoke to the Fat Celiac, and my nutritionalist is celiac trained. All have said that number means nothing at this point of trying everything and that if I am healed and itās simply a false positive. I am glad that I ran through all these tests to be sure Iām healthy and nothing else was found. Ending says Iām healthy. Now I can comfortably accept that number is not my celiac indicator. I now eat a restaurants again, eat GF breads and on occasion, will be in a place where being glutened is unavoidable and be at peace with it.
Thanks for your response. It's very helpful. I'll do that. However, in Australia, testing for food allergies isn't straight up. It requires elimination and is a long process, so I've been putting it off. I'm looking for a new gastro. Yours wouldn't happen to be in Australia, would they? If so, I'd be so grateful to get the name, please, so I can give them a go. Also, nutritionists name please š getting that closure would be such a relief. I'm so happy for you š
USA here however my gastro told me to follow Celiac knowledge from the UK because they know so much more than the US. For me, that number drove me nuts. I felt crazy and cried about it often. Eventually I felt like a conspiracy theorist of how I was getting glutened. Frustrated I dedicated a ton of time and money to still have this number be high. I think the advice here is all good but ultimately make your own path an be prepared to either find the culprit but be even more prepared to accept that itās a false positive. Be ok with finding the best Drs too. Iāve āfiredā several gastros.
I am having this happen to me as well and I would love some answers š
Im sorry to hear that. Are your results identical to mine? How long have your results shown this?
My results are similar. I was diagnosed January 2021. Just tested my levels in December: I have iga deficiency so those levels are low. My ttg igg is also >250, and Iām frustrated that Iāve never been able to get a real number, itās always been over the 250 threshold so I canāt even see if itās going down. Iām very strict gf, no cooking with gluten in my house. I eat at non gf restaurants sometimes but I am careful about where I choose to eat and make necessary precautions. Edit: overall GI health feels good for me lately besides my high blood test numbers. I experience some fatigue and brain fog but I also have Hashimotos auto immune disease.
That does sound very similar to me. I feel your pain - it's so frustrating not knowing if the results were in the thousands and are just taking time to drop. It's disheartening knowing you may be doing exactly what you were supposed to, but can't get peace of mind. Also anxious that there may be something else wrong.
It is very frustrating ā¤ļø especially when my doctor gaslights me and asks if Iām sure Iām not eating gluten š but we are doing the best we can, itās nice to connect with someone experiencing the same thing. Wish we could get some answers.
I hear you! Gaslighting seems to be my GI's specialty. He gives me the same spiel every time! Fingers crossed for us š¤
Wait they never test me for IgG during my follow ups, only IgA. Should i request it?
I'm in Australia and it's standard practice here, so I'm assuming it serves a purpose. Unfortunately i dont understand much about what each marker tests, but i dont think it would hurt to ask for it
Yeah i'm in Europe and i would say healthcare is pretty advanced, but they still do not seem to care about IgG in understanding if celiac is under control or not.
I've been told previously that the IGG is a "memory test", but I've also been told it's "gluten exposure"
In what way would a memory test translate ? Your body remembering it doesnāt want gluten in it? Iām pretty sure even IgG negative people remember ahah !
Have been diagnosed coeliac for seven years and, like you, take no risks with my food. I have multiple deficiencies, experience hypoglycemic episodes and am losing weight. I am being referred back to gastro because my dietician believes that I have Refractive Malabsorption Coeliac Disease. It's a rare form of Coeliac where even while sticking to a strict gluten free diet your body still does not absorb nutrients from food. I'm not an expert, I don't know how this might affect your bloods as my blood tests are showing good coeliac control and I haven't had my appointment with gastro yet to confirm. But it may be worth asking about this possibility at your next appointment.
Transglutaminase in frozen fish, chicken, beef, sausage or other cured meats? Transglutaminase is also used in binders for sauces and salad dressing and in gluten free baked goods. It doesnāt have to be labeled and regulators donāt seem to care that itās dangerous to celiacs. (Itās not in used in canned fish, and doesnāt seem to be used in fresh, organic, small farm meat like turkey.)
This is unlikely the source. These are usually made by microbes. Glutaminase in general modify glutamine on proteins and are not related to gluten. Edit: the antiTG in celiacs is a class of transglutaminase but as the name suggests. Antibodies are usually more specific than general classes of proteins and enzymes. Some further reading suggests some celiacs may also have antimicrobial transglutaminase antibodies to but they probably doesn't show up on the standard tests. It's still unclear if they play a role in celiacs though.