Just Diagnosed With Celiac Yesterday

[ruthie-ray]

Hi All,

I just joined this forum today.  I was just given the news by my doctor yesterday that I tested positive for Celiac.  He said that my Endomysial Antibody IgA, t-Transglutamines (tTG) was >100 positive along with Immunoglobulin A, Qn, Serum 436.  I was already on a low-gluten diet for a week or two leading up to the testing, since I had a hunch that is what is was and so did the immunologist.  In the past year, I've been to a rhuematologist, dermatologist, family physician, etc. all treating my symptoms, so I figured that something was causing it all.  I've always had some constipation and bowel issues, skin issues, blood sugar problems, chronic anemia, but in the past 12 months, I started to develop joint pain and inflammation, had elevated ANA levels, confused RA docs, along with exzema. 

 

The immunologist does not feel that a biopsy is necessary, since he feels the test results were obvious enough to him to just start a gluten free diet.  Did anyone else have a physican give a Celiac diagnosis w/out a biopsy?

 

Thanks,

Ruth

[nvsmom]

I never had a biopsy either. Some doctors don't push for one when you have a positive EMA IgA because that test indicates that there is a significant amount of damage in your intestines already. That test, along with a positive ttg IgA is a pretty clear diagnosis.

 

Did they check your iron, ferritin, calcium, D, B12 and potassium levels too? Celiacs are often low in those areas because of absorption problems in their intestines from the damage (as I understand it).

 

Anyway, welcome to the forum, and I hope you feel well soon!

[GFinDC]

Welcome to the forum Ruthi!

 

I've read on here that some doctors will diagnose based on blood antibodie tests and response to the gluten-free diet.  If you stop eating gluten and you get better, plus you had positive antibodies and they decrease over time, then it seems pretty obvious you have celiac disease.  Sometimes it can take months or years to recover from celiac though, and that can sometimes make people question their diagnosis.  If you are sure you can stick to the gluten-free diet, then it might make sense to get he endoscopy done.  Otherwise though there isn't a big need to have it.  Unless you want o participate in clinical trials, where they always seem to require it.

[ruthie-ray]

They did check my iron.  I've been sort of chronically anemic for a few years and supplements haven't been working, so they said my iron was low.  I am low in B12 and deficient in vitamin K.  Over the years there has been many times when I've had low iron, low B12, and every time, I was told to take supplements.  I eat lots of healthy foods, I'm already on (for more than a year) a almost 40-50% fruits/veggies diet and I juice 1 meal each day, eating all fiber, pulp with spinach, kahl, celery, cucumber, apples, ginger, strawberries, bluberries, lemon. Unfortunately, on the side of my large juice, was a little cheese and whole wheat crackers, chock full of gluten.  At breakfast, I usually have fruit and a Whole grain english muffin.  At dinner, a salad or a few veggies servings, protein and something whole grain.  I buy hormone free dairy and meat.  Thought I was healthy eater, but oddly didn't feel great and had all of these weird issues and skin probs.  I'm just glad to know that if I cut out gluten it might make a difference.    Thanks for the info.  I'm trying the gluten free diet.  Need to head over to "Sprouts" tonight. Thanks

I never had a biopsy either. Some doctors don't push for one when you have a positive EMA IgA because that test indicates that there is a significant amount of damage in your intestines already. That test, along with a positive ttg IgA is a pretty clear diagnosis.

 

Did they check your iron, ferritin, calcium, D, B12 and potassium levels too? Celiacs are often low in those areas because of absorption problems in their intestines from the damage (as I understand it).

 

Anyway, welcome to the forum, and I hope you feel well soon!

[ruthie-ray]

Thanks for the info.  I'm going to try the gluten-free diet.  I'm pretty disciplined, so I think I can stick to it, but I feel like to need to educate myself, since I use a ton of lotions, make-up, lip products, hair care, etc. and I'm worried I'll accidentally ingest gluten unintentionally.  Been looking for some good information to see which of my products might contain gluten or what some of the code words in products are to determine if they contain gluten.  Thanks again.

Welcome to the forum Ruthi!

 

I've read on here that some doctors will diagnose based on blood antibodie tests and response to the gluten-free diet.  If you stop eating gluten and you get better, plus you had positive antibodies and they decrease over time, then it seems pretty obvious you have celiac disease.  Sometimes it can take months or years to recover from celiac though, and that can sometimes make people question their diagnosis.  If you are sure you can stick to the gluten-free diet, then it might make sense to get he endoscopy done.  Otherwise though there isn't a big need to have it.  Unless you want o participate in clinical trials, where they always seem to require it.

[Cara in Boston]

Don't want to lecture you or anything but your blood tests indicate you have Celiac Disease which is more serious than just a simple food intolerance.  Your word choices like "gluten light" and "If I cut out gluten" and "going to try the diet" make me concerned.  You need to be 100% gluten free - all the time - from now on.  No cheating (special occasions, holidays, just because your finally feeling good, etc.) ever.  It is an autoimmune disorder that, if triggered, can lead to other problems.

 

All your first degree relatives should be tested as well - even if they have no symptoms at all.

 

Your doctor is right that you don't need a biopsy - it is clear from your blood tests.

 

Welcome to the forum.  I found it very helpful when my son and I were first diagnosed.  It sounds like you already eat pretty healthy so you should have no trouble.  Best of luck to you.

[ruthie-ray]

Hi Cara,

 

Thanks for the info.  I was only on a "gluten-light" diet for a week or so leading up to the testing since I was starting to assume that I could have Celiac disease.  Now that I have a confirmed diagnosis, I plan to treat it like a life-long issue rather than a temporary test.  I will find it hard with certain things, like holidays.  We spend Thanksgiving and Christmas with my husbands family out of state and they are all overweight and on the SAD diet.  I already had trouble and usually feel sick by the end of our 7-10 day visit, since all they eat are mostly starchy, unhealthy foods with an occiasional frozen veggie or canned veggie thrown in.  They are from Cincinatti and a mealtime favorite in Ohio is Chili poured over Spaghetti noodles.  I've never eaten it, but I always feel so rude, running to the store once we land on the plane and picking up some fresh veggies and healthy snacks for my kids while we are in town.  At Thanksgiving, I eat the turkey and always make a side salad and everything else is white or yellow on the table, but my green beans and salad.  My husband has become so much more healthy since we were married and now he is even a juicer, but still hard at the holidays.  While at home, it should be easy.  I work from home and have the freedom to make my own lunch each day.  I've addressed all of the obvious items, like breads, rices with hidden gluten, corn products with hidden gluten, etc.  The hard part will be odd things that I may have never thought contained gluten, like spice mixes or marinades that I use for my meat.  I was able to locate some gluten free brown rice, made a stirfry with some gluten free mardinade I found at the store.  I think I may be trying some new products just to get some variety.  Thanks for the info and reminder that it isn't something to take likely.  My next step this week is finding new make-ups.  I haven't been wearing much this week, except minersals which say they are gluten free and burts bees lipgloss which said it was too.  Unfortunately, I think I have to buy new eyeshaddow, foundations, liners, mascara, etc. since most did not appear to be gluten-free. 

Don't want to lecture you or anything but your blood tests indicate you have Celiac Disease which is more serious than just a simple food intolerance.  Your word choices like "gluten light" and "If I cut out gluten" and "going to try the diet" make me concerned.  You need to be 100% gluten free - all the time - from now on.  No cheating (special occasions, holidays, just because your finally feeling good, etc.) ever.  It is an autoimmune disorder that, if triggered, can lead to other problems.

 

All your first degree relatives should be tested as well - even if they have no symptoms at all.

 

Your doctor is right that you don't need a biopsy - it is clear from your blood tests.

 

Welcome to the forum.  I found it very helpful when my son and I were first diagnosed.  It sounds like you already eat pretty healthy so you should have no trouble.  Best of luck to you.

[1desperateladysaved]

Hi Ruthie,

 

It sounds like you have a great start: A definative diagnosis and some learning about gluten.  I was diagnosed by a trial diet and then a genetic test.  I had the genes for celiac and a positive response to the diet.  The MD felt there was no need for a biopsy.  Since, we have found more evidence that I am suffering from celiac.  But I am getting better.

 

Get better,  ***

Diana

[Mom-of-Two]

Commenting on the above: when EMA positive, that tells you there is significant intestinal damage- my 8yo was EMA positive, positive TTG, and very low vitamin D at time of testing- but her biopsy was and I quote "beautiful" according to our first ped GI who then informed me to keep feeding her gluten- saw a second opinion who said that is crap, this child cleary has active celiac (I have celiac also), and to treat her as such. Drew me a picture of how easy it is to miss damage in children on biopsy. 6 months gluten free, she is EMA negative, TTG normal, and vitamin D tripled.

So.....the way I understand it is that EMA directly coorelates to intestinal damage- we should assume that my daughter had damage then, especially with her low vitamin D, correct? It has bugged me for 6 months that they found no damage, as a parent you just wonder! Now that she is EMA negative, does this mean healing has been totally successful then? I assume so if her vitamin D is now excellent (being absorbed). It just irks me that we put her through biopsy, they took plenty of samples, and it was missed!