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Confused About Being Celiac

notsosure

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notsosure Newbie
notsosure
Posted

Hello,

I have been on gluten free diet for almost an year but i am still not sure if i have celiac disease.

A little background...

I am a diabetic type 1 for past 6 years. Around year and half back, I and was randomly tested for Vit-D by my endocrinologist and it was very low 18[32-100]. I was given a prescription and then tested again in 3 months and it was still low so was given another prescription and again checked. The endo told me that the levels are not coming up as he would expect. I was also told that Vit-D is usually low in Asians, when we tested for my wife should also had it at 18. She does not have any autoimmune diseases.

My endocrinologist gave me a lab order for the Celiac disease panel as i was having a history of autoimmune diseases (diabetes and thyroid). The test came out positive for Endomysial Antibody IgA, tTG IgA was > 100 and Immunoglobulin A, Qn, Serum was normal of 174 [70-400]. The endocrinologist then asked me to visit a GI. I scheduled an appointment with GI (May 2010) who immediately asked my to go on gluten free diet and ordered few more blood tests (CBC, CMP14, Iron and TIBC, Folate, GGT, Vit b12, ferritin and Vit-A). All the results were normal except ferritin 12[30-400] and was asked to take over the counter iron supplement 65mg (equivalent to 325mg ferrous sulphate) 3 days a week. In a test after 3 months this raised my hemoglobin so was asked to reduce it to 2 days a week and around 5 months back asked to stop the iron supplement as the ferritin level was normal. Also my vit-D was normal 8-9 months back and was asked to take only 1 2000IU tab a day down from 2 2000IU tablets a day.

In July 2011, I asked my GI about getting a biopsy to be sure before being on gluten free for life, he said there is not need for it. He also told me during past few visits that i can have gluten, like a slice of indian bread once in a while. When tried to find out what he meant by once in a while he said like 3-4 times a month. Recently i visited dietician who found it ridiculous that i was given OK to eat small amount of gluten 3-4 times a month and has asked to take a second opinion. Even when my endo found out that i was asked to go on gluten free diet he said he did not send me to get on gluten free diet he just wanted to make sure there are not any other complications.

As of today i have never lost sudden weight and gaining weight year by year. I have occasional gluten (accidental discovery) and never had any issues or reactions. I also believe that our kitchen has cross gluten contamination but GI doctor said it was ok and no need for a gluten free kitchen.

My test results for tTG are as follows and all labs tests except diabetes are normal. I am not sure if they are up now due to the suppliments that i am taking or due to gluten free diet( with occasional gluten).

I started gluten free diet from 6/10/10 and following is the history of my test results for tTG.

tTG IgA 3/22/10 is > 100 - IgA positive

tTG IgA 1/7/11 is 9

tTG IgA 7/1/11 is 8

I read in a celiac book that tTG can be found positive if you are diabetec and have other autoimmune diseases. So should i really take a second opinion or biopsy test now or is it too late? Am i really a celiac? I am finding it hard to balance between diabetes and celiac as i have to eat foods (simple carbs) in celiac that i should avoid for diabetes.

Please share your suggestions...

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Reba32 Rookie
Reba32
Posted

once you're on a gluten free diet for a couple of weeks, any diagnostic tests to find Celiac disease are going to be negative. You MUST have gluten in your system in order to properly diagnose Celiac disease. It just boggles me why any adequately trained GI would recommend you start the gluten free diet before testing, that's absolutely rediculous!

Do you feel better on the gluten free diet than you did before you started it? If so, it is likely that you are either gluten intolerant or Celiac. If you want to be tested for Celiac disease though, you will have to do a gluten challenge for about 8 weeks in order to be properly diagnosed. If you are Celiac, a challenge can be quite painful and physically upsetting. And probably won't help your diabetes any either.

notsosure Newbie
notsosure
Posted
  • Author

once you're on a gluten free diet for a couple of weeks, any diagnostic tests to find Celiac disease are going to be negative. You MUST have gluten in your system in order to properly diagnose Celiac disease. It just boggles me why any adequately trained GI would recommend you start the gluten free diet before testing, that's absolutely rediculous!

Do you feel better on the gluten free diet than you did before you started it? If so, it is likely that you are either gluten intolerant or Celiac. If you want to be tested for Celiac disease though, you will have to do a gluten challenge for about 8 weeks in order to be properly diagnosed. If you are Celiac, a challenge can be quite painful and physically upsetting. And probably won't help your diabetes any either.

I do feel better now but when i started gluten free my ferritin was low and my thyroid dose was still being experimented so not sure if any of these or gluten helped it. While on gluten diet i had headaches only once in a while may be in 10-15 days and did not have any stomach related issues nor any major issues with anything that would have led me to testing for celiac.

I am not gluten sensitive since i have had gluten after being on gluten free for 6 months (1 slice of bread, 1 beer, and many times accidental ingestion) and did not have any issues.

Reba32 Rookie
Reba32
Posted

"issues" are not always blatantly obvious though. Not everyone gets a painful gut reaction to eating gluten, sometimes it's just other unidentifiable malaise. Which is what makes this disease so frustrating are difficult to pin down.

ElseB Contributor
ElseB
Posted

I read in a celiac book that tTG can be found positive if you are diabetec and have other autoimmune diseases. So should i really take a second opinion or biopsy test now or is it too late? Am i really a celiac? I am finding it hard to balance between diabetes and celiac as i have to eat foods (simple carbs) in celiac that i should avoid for diabetes.

I've never heard this before. But what I have heard from many experts in the field is that undiagnosed Celiac can lead to many other autoimmune diseases, particurly diabetes and thyroid issues. What this means is that if someone is celiac and not following a gluten free diet, they are susceptible to developing other autoimmune diseases. Strictly following a gluten free diet "protects" a person from developing other autoimmune diseases. So the fact that you have other autoimmune diseases may in fact be a symptom of Celiac.

Skylark Collaborator
Skylark
Posted

The test came out positive for Endomysial Antibody IgA, tTG IgA was > 100 and Immunoglobulin A, Qn, Serum was normal of 174 [70-400].

Sorry for bad news, but I absolutely think you're celiac. TTG can come up in other autoimmune diseases but endomysial is specific to celiac disease. The combination of both is strong enough that your GI didn't feel the need to biopsy, which is consistent with recent suggestions from researchers. Also, your TTG has come down since you've been gluten-free which is even stronger proof that it's caused by celiac disease and not your diabetes. Also, you seem to be absorbing vitamin D now, which is evidence of recovery from the malabsorption.

At this point, you would have to gluten challenge for about three months, eating 3-4 slices of bread worth of gluten a day to get a meaningful biopsy. Even if you did get the biopsy, there is no guarantee that it would agree with the antibodies; celiac damage can be patchy and biopsies don't always find it.

I'm sure the diabetic/celiac diet is an absolute pain but you can't do things like eat bread occasionally. Your GI was wrong about that and occasional cheating keeps your villi from healing up. Peter, one of the moderators, has Type I and celiac too. He can probably help with suggestions if you message him.

notsosure Newbie
notsosure
Posted
  • Author

I've never heard this before. But what I have heard from many experts in the field is that undiagnosed Celiac can lead to many other autoimmune diseases, particurly diabetes and thyroid issues. What this means is that if someone is celiac and not following a gluten free diet, they are susceptible to developing other autoimmune diseases. Strictly following a gluten free diet "protects" a person from developing other autoimmune diseases. So the fact that you have other autoimmune diseases may in fact be a symptom of Celiac.

In the book Celiac Deisease: A hidden epidemic it states "the tTG antibody is not 100% specific - there are other causes of it being positive, and they include diabetes, heart failure, Crohn's disease and liver disease. Also people with celiac disease can have negative tTG test"

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notsosure Newbie
notsosure
Posted
  • Author

Sorry for bad news, but I absolutely think you're celiac. TTG can come up in other autoimmune diseases but endomysial is specific to celiac disease. The combination of both is strong enough that your GI didn't feel the need to biopsy, which is consistent with recent suggestions from researchers. Also, your TTG has come down since you've been gluten-free which is even stronger proof that it's caused by celiac disease and not your diabetes. Also, you seem to be absorbing vitamin D now, which is evidence of recovery from the malabsorption.

At this point, you would have to gluten challenge for about three months, eating 3-4 slices of bread worth of gluten a day to get a meaningful biopsy. Even if you did get the biopsy, there is no guarantee that it would agree with the antibodies; celiac damage can be patchy and biopsies don't always find it.

I'm sure the diabetic/celiac diet is an absolute pain but you can't do things like eat bread occasionally. Your GI was wrong about that and occasional cheating keeps your villi from healing up. Peter, one of the moderators, has Type I and celiac too. He can probably help with suggestions if you message him.

Thanks everyone for replies...

Though the book even says that the IgA can be positive for some other conditions you make a good point that after starting a gluten free diet my tTG and IgA came down which can indicate i am celiac. Also after on gluten-free diet i was asked to take Vit-D 2000IU, multivitamins and fish oil supplements everyday which could contribute to all vitamin levels being normal.

In my next visit to GI i would definitely check why he is allowing me to eat gluten occasionally.

Skylark Collaborator
Skylark
Posted

Though the book even says that the IgA can be positive for some other conditions

TTG can be present in other conditions, but anti-endomysial IgA is 100% specific for celiac disease. Lab errors are always possible, but the combination of anti-endomysial and TTG leaves little room for lab error or doubt.

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