Someone else confused...

[Maxipoo]

I am glad to find this forum. I have had a few years of odd health issues. A neurologist finally referred me to a gastroenterologist a few weeks ago. There was a biopsy of the small intestines that showed signs of Celiac Disease. He told me that, and I immediately started cutting gluten. He told me I would have bloodwork to confirm three weeks later. I had the bloodwork with no suggestion to stay on gluten. My mistake to go off for three weeks I guess. Anyway, the blood test results came in with some positive measures anyway - see below. The gastroenterologist said he wanted to blood test one more time in a month. I told him I was cutting gluten the three weeks leading up to the first blood test and guess I shouldn’t have. He said that probably did not impact the test. I asked if I should start back for the second blood test and he said it didn’t matter. I left confused with that suggestion and also by the necessity of the second blood test. Would love some insight from those with knowledge. I could not figure out how to upload a pic and hope the way I typed this up makes sense. I am so thankful to anyone who can enlighten me.

Gliadin Peptide - Ab.IgA / 15 (negative 0-19)

Gliadin Peptide - Ab.IgG / 37 (strong positive 30+)

Tissue Transglutaminase Ab.IgA / 4 (positive 4+)

Tissue Transglutaminase Ab.IgG / 2 (negative 0-5)

Endomysium Ab.IgA / 389 (positive 387+)

 

[trents]

Welcome to the forum, Maxipoo!

Well, I strongly disagree with you GI doc about already beginning the gluten-free diet not having any affect on your blood antibody scores. The Mayo Clinic Guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) until the blood draw is done. You have mixed weak positives and negatives in alll the tests that were run except for the GPIGG which was a strong positive. I'm betting had you been on gluten up to the day of the blood draw you would have had less negatives and stronger positives. If you can tolerate it, go back to eating regular amounts of gluten until the next blood draw.

Edited April 20, 2023 by trents

[Maxipoo]

8 hours ago, trents said:

Welcome to the forum, Maxipoo!

Well, I strongly disagree with you GI doc about already beginning the gluten-free diet not having any affect on your blood antibody scores. The Mayo Clinic Guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) until the blood draw is done. You have mixed weak positives and negatives in alll the tests that were run except for the GPIGG which was a strong positive. I'm betting had you been on gluten up to the day of the blood draw you would have had less negatives and stronger positives. If you can tolerate it, go back to eating regular amounts of gluten until the next blood draw.

Thank you trents. What does it take for a Celiac diagnosis? I am assuming my positive biopsy and the blood test with some positive indicators is not enough since the gastroenterologist wants to do more blood testing? Is a diagnosis doctor-dependent and somewhat subjective? I have 22 days before the next test. I will start eating a couple of pieces of bread everyday regardless of what the doctor said.

[trents]

1 hour ago, Maxipoo said:

Thank you trents. What does it take for a Celiac diagnosis? I am assuming my positive biopsy and the blood test with some positive indicators is not enough since the gastroenterologist wants to do more blood testing? Is a diagnosis doctor-dependent and somewhat subjective? I have 22 days before the next test. I will start eating a couple of pieces of bread everyday regardless of what the doctor said.

In some countries, like the UK, doctors will commonly grant a celiac diagnosis on the blood work alone if the tTG-IGA scorer is 10x normal. In the USA it typically requires a positive tTG-IGA (or another positive celiac antibody in the blood work) followed by a positive biopsy. The tTG-IGA is the "darling" antibody test because it is inexpensive and combines good sensitivity with good specificity. The EMA may be an even better antibody test because it is highly specific, offers good sensitivity but is seldom ordered because it is expensive. The DGP/IGP tests are less specific for celiac disease but are valuable because they can catch those who actually do have celiac disease who respond atypically to the tTG-IGA and throw a negative for it. People with low total IGA amounts may will generally have repressed scores in the particular IGA tests like the tTG-IGA. It is a shame that so many doctors will only order the tTG-IGA because it misses about 20% of those who actually have celiac disease and are of white European decent. It misses even more with blacks and perhaps Asians. There is so much ignorance in the medical community about gluten-related disorders. We find that typically we have to go armed with information, prepared to be appropriately assertive in order to get proper testing done.

The endoscopy with biopsy is considered to be the gold standard of celiac diagnosis.

There is also something known as NCGS (Non Celiac Gluten Sensitivity) for which there is no testing, is 10x more common than celiac disease and shares many of the same symptoms. Celaic disese must first be ruled out in order to get a NCGS diagnosis. Some experts feel that NCGS can be a precursor to celiac disease.

Genetic testing for the presence of "celiac genes" can also be helpful when blood test scores are borderline. Genetic testing establishes that you have potential for developing celiac disese but it does not guarantee that you have it or will develop it. The potential requires some kind of trigger, like a viral infection, to turn on the latent celaic disease. About 40% of  the general population have one or more celiac genes but a small percentage of those actually develop it.

Here is a primer for understanding blood antibody tests used to diagnose celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited April 20, 2023 by trents

[Maxipoo]

1 hour ago, trents said:

In some countries, like the UK, doctors will commonly grant a celiac diagnosis on the blood work alone if the tTG-IGA scorer is 10x normal. In the USA it typically requires a positive tTG-IGA (or another positive celiac antibody in the blood work) followed by a positive biopsy. The tTG-IGA is the "darling" antibody test because it is inexpensive and combines good sensitivity with good specificity. The EMA may be an even better antibody test because it is highly specific, offers good sensitivity but is seldom ordered because it is expensive. The DGP/IGP tests are less specific for celiac disease but are valuable because they can catch those who actually do have celiac disease who respond atypically to the tTG-IGA and throw a negative for it. People with low total IGA amounts may will generally have repressed scores in the particular IGA tests like the tTG-IGA. It is a shame that so many doctors will only order the tTG-IGA because it misses about 20% of those who actually have celiac disease and are of white European decent. It misses even more with blacks and perhaps Asians. There is so much ignorance in the medical community about gluten-related disorders. We find that typically we have to go armed with information, prepared to be appropriately assertive in order to get proper testing done.

The endoscopy with biopsy is considered to be the gold standard of celiac diagnosis.

There is also something known as NCGS (Non Celiac Gluten Sensitivity) for which there is no testing, is 10x more common than celiac disease and shares many of the same symptoms. Celaic disese must first be ruled out in order to get a NCGS diagnosis. Some experts feel that NCGS can be a precursor to celiac disease.

Genetic testing for the presence of "celiac genes" can also be helpful when blood test scores are borderline. Genetic testing establishes that you have potential for developing celiac disese but it does not guarantee that you have it or will develop it. The potential requires some kind of trigger, like a viral infection, to turn on the latent celaic disease. About 40% of  the general population have one or more celiac genes but a small percentage of those actually develop it.

Here is a primer for understanding blood antibody tests used to diagnose celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Thanks again. I will have to read about some of the specific things you discuss in order to educate myself. For the layperson, how does this information you provided relate to my specific situation involving a positive biopsy and the blood test results noted above?

[trents]

The biopsy is the gold standard for celiac diagnosis. I guess I don't understand why you need more blood antibody testing done.

[Maxipoo]

10 minutes ago, trents said:

The biopsy is the gold standard for celiac diagnosis. I guess I don't understand why you need more blood antibody testing done.

Hmmm... OK. Thanks again for the great info trents! If anyone else has ideas as to why more blood testing is needed, please let me know. It will be interesting to compare the second test with the first I suppose. 

[RMJ]

It seems like some doctors really don’t like to give a diagnosis of celiac disease!  You have positive biopsy and some positive bloodwork.  One doesn’t have to have all the antibodies positive to have celiac disease.

Sometimes when doctors want to do more testing it helps to ask: “ What difference will the results make to your recommendations for treatment?” If the results won’t really be used, I will decline a test.

[Scott Adams]

I agree, it takes only a single positive blood test, then a single positive biopsy result to diagnose celiac disease, and any other negative blood tests should be irrelevant. 

This article includes probabilities for any positive results:

Tissue Transglutaminase Ab.IgA / 4 (positive 4+)

Quote

The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

 

[Scott Adams]

If you combine a 90-95% correct rate of diagnosis for that blood test, AND a positive biopsy, what is the likelihood that you don't have celiac disease?

[Maxipoo]

5 hours ago, RMJ said:

It seems like some doctors really don’t like to give a diagnosis of celiac disease!  You have positive biopsy and some positive bloodwork.  One doesn’t have to have all the antibodies positive to have celiac disease.

Sometimes when doctors want to do more testing it helps to ask: “ What difference will the results make to your recommendations for treatment?” If the results won’t really be used, I will decline a test.

I feel a bit like that in this case.

4 hours ago, Scott Adams said:

If you combine a 90-95% correct rate of diagnosis for that blood test, AND a positive biopsy, what is the likelihood that you don't have celiac disease?

Great input and specific. Thank you.

[Maxipoo]

On 4/20/2023 at 2:08 PM, Scott Adams said:

If you combine a 90-95% correct rate of diagnosis for that blood test, AND a positive biopsy, what is the likelihood that you don't have celiac disease?

Scott, 

I was looking through my paperwork from the last year and saw that a walk in clinic ran an autoimmune panel in November. It had a “Celiac Disease Evaluation” section. It does not indicate any positives. I guess this is possible though the results I noted earlier in this thread via a gastroenterologist just a few months later lean positive? The test results look to have some different thresholds. This adds to my confusion. Am I comparing apples to apples here?

TTG AB IgA - <0.5  (Reference Range <0.5-14.9)

Deaminated Gliadin AB IgA - 2.3 (Reference Range <0.2-14.9)

Deaminated Gliadin AB IgG -  1.0 (Reference Range <0.4-14.9)

IgA w/ Reflex to Tissue Trans & IgG Ab - 379 (Ref Range 70-400)

 

[trents]

Different labs used different scales because they each develop their own tests. There is no industry standard for celiac tests. So, you can't compare test numbers from one lab to another. But this will not affect results as far as negative vs. positive. I'm thinking your onset of celiac disease is fairly recent and the first autoimmune test results were pre onset.

[Scott Adams]

On 4/23/2023 at 8:15 AM, Maxipoo said:

IgA w/ Reflex to Tissue Trans & IgG Ab - 379 (Ref Range 70-400)

I'm not sure how much gluten you were eating before this earlier test was done, but it's true that each of the results in this older blood screening appear to be negative results. I would only add that one of these test results in nearly in the positive range, which still supports the idea that you are having an autoimmune reaction to gluten.

[Maxipoo]

On 4/24/2023 at 11:48 AM, Scott Adams said:

I'm not sure how much gluten you were eating before this earlier test was done, but it's true that each of the results in this older blood screening appear to be negative results. I would only add that one of these test results in nearly in the positive range, which still supports the idea that you are having an autoimmune reaction to gluten.

Hmmm. Only major thing between then and now was a positive covid test. Strange to feel it, but I would like to think celiac disease explains all my odd medical symptoms over the last two years. Maybe it is just applicable to recent ones. I have two and a half weeks until the next blood test now. I will keep throwing down some gluten and see what the results yield. My neurologist told me last week there is nothing he can do to help me and sent me on my way. I asked about a gluten / nervous system link and he said he knew of none. I get the impression from my reading on this board and others that is not the case.

[trents]

Ask your neurologist if he's ever heard of gluten-related ataxia.

https://pubmed.ncbi.nlm.nih.gov/25925933/

[Scott Adams]

Just FYI, this category on our site has many research summaries on gluten ataxia and celiac disease:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

[knitty kitty]

@Maxipoo,

I'm a curious kitty.  What are your strange medical symptoms?  Why did you go to a neurologist?  

I had subclinical vitamin and mineral deficiencies for years.  An illness like Covid (any physical or emotional stressor) can push the body into a serious deficiency as the body's vitamin stores run out.  Unfortunately, my doctors did not recognize vitamin deficiency symptoms and sent me away much as your neurologist sent you away.  Having studied them at uni, I started supplementing with vitamins and minerals.  My health started improving quickly.  

Have you been checked for vitamin and mineral deficiencies?  

[Maxipoo]

On 4/27/2023 at 4:02 AM, knitty kitty said:

@Maxipoo,

I'm a curious kitty.  What are your strange medical symptoms?  Why did you go to a neurologist?  

I had subclinical vitamin and mineral deficiencies for years.  An illness like Covid (any physical or emotional stressor) can push the body into a serious deficiency as the body's vitamin stores run out.  Unfortunately, my doctors did not recognize vitamin deficiency symptoms and sent me away much as your neurologist sent you away.  Having studied them at uni, I started supplementing with vitamins and minerals.  My health started improving quickly.  

Have you been checked for vitamin and mineral deficiencies?  

If I remember correctly, the only thing ever noted over the last two years was low Vitamin D. I have experienced muscle twitching, neuropathy, and brain fog along with a host of other issues. One neurologist noted “mononeuritis multiplex.” He shut down his clinic because his wife is terminal. I had a follow up with a different neurologist a couple of weeks ago. He said he was perplexed, could not help me, and sent me on my way. I do not recall having a full panel or anything of the sort to check for vitamin deficiency issues. Maybe I should do that. I ate gluten like crazy for a month leading up to the follow up bloodwork. My numbers were lower with just one measure for Celiac positive this time. I just looked at the results a couple of minutes ago. I do not know how to interpret this moving forward. I am about to post for community feedback before calling the gastroenterologist tomorrow.

[knitty kitty]

@Maxipoo,

Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.  It's common to have more than one deficiency in Celiac Disease.  Unfortunately, medical professionals are not given much training in nutritional deficiency symptoms.  

Vitamin deficiencies need to be corrected quickly so that the damage does not become permanent.

Mononeuritis Multiplex like symptoms are found in Thiamine deficiency and also in Cobalamin B12 deficiency, both of which can cause brain fog (early dementia) and nerve damage (neuropathy).  Magnesium deficiency can cause muscle twitching.  Iron, potassium, and calcium deficiencies can affect brain function, too.

Fighting a severe infection like Covid can deplete Thiamine.  Without sufficient thiamine, mitochondria start to shut down and die.  Mitochondrial dysfunction is said to be the basis of diseases.  

To replace Thiamine, high doses are required (500- 1500mg/day of thiamine hydrochloride).  Benfotiamine (sulbutiamine) and Tetrahydrofurfuryl disulfide (TTFD) can also be used.  Lower doses of these can be used because they can get into cells and mitochondria easily.  

I corrected my Thiamine deficiency with over the counter thiamine supplements like these.  My doctors were clueless about vitamins and malabsorption.  I also took a B Complex supplement because all the B vitamins need each other to function properly.

Please talk to your doctor or nutritionist about supplementing essential nutrients while you are healing.  

Keep us posted on your progress!

Edited May 19, 2023 by knitty kitty
Typo correction