Please Help In My Diagnosis?

[jhun]

i'm diagnosed to have celiac disease two weeks ago and was also positive in the lactose tolerance test. my serology test showed a positive AGA (anti gliadin), high tTG (anti-tissue transglutaminase) and a normal EMA (anti-endomysial...) i just want to know if these results are conclusive of celiac disease. i was just thinking of having a biopsy done to be 100% sure. your inputs will be highly appreciated.

[Carriefaith]

I had the biopsy done of the small intestine and I also had the blood test. The biopsy will just provide more evidence for or aganist celiac disease.

[jhun]

will a one month gluten free diet affect the accuracy of a biopsy? i am really depressed now because here in UAE nobody even knows what celiac is that's why it took me three doctors, two colonoscopies, lots of blood, stool and urine tests, ultrasounds, x-rays including ivu before i was diagnosed with celiac after 10 months of exhaustive consultations. the first doctor diagnosed me with IBS, the second diagnosed me with non-specific colitis (he did a biopsy of my colon) and finally the third doctor (UK educated) diagnosed me with celiac but he did not suggest a biopsy of the small intestine.

it is really hard to have this disease in this country since nobody supports it, there is only one shop that sells a few gluten-free foods and to reach there needs a good two hours drive. there is also no support groups here. i just feel lucky to be an asian since our staple is rice but it really troubles me when dining out which seems to be impossible for me now and when i shop for groceries i just have to rely on my instincts when it comes to bottled and canned foods because i don't trust the labelling of products here since people here doesn't know what are the consequences of wheat to a celiac. yesterday i saw a rice cracker with an ingredient of wheat (gluten free) i don't understand how can wheat be gluten-free.

it's only in this forum i felt that i could express my feelings, receive moral support and clear all my confusions.

[nikki-uk]

To have an endoscopy now after 1 month gluten-free is highly likely to give you a false negative - so unless you are prepared to back to eating a high gluten diet for at least 6 weeks before a biopsy I'd say there's not much point unfortunately

In answer to your question how can a gluten-free cracker have wheat as an ingredient (yes it's very confusing isn't it?) - it is probably refering to a codex wheatstarch.

You don't say what country you are in but I am in the UK and here if an item has a codex level of wheat in it , it can declare it's gluten-free.

Codex levels in the UK are less than 200 parts per million (of gluten) and these levels are deemed to be safe for coeliacs (i.e not cause damage)

However - alot of coeliacs do react with symptoms to codex -- so caution is needed!!

I would say whilst you are trying to get used to the gluten-free diet it might be best to avoid codex products.

Alot to take in I know!..but you learn as you go along and things do get easier.

Going back to basics, making things from scratch is often the easiest way to go as you know precisely what's in it - so you'd probably again do best to avoid canned, bottled and pre prepared food if you can't be 100% of the labelling/ingredients

Good Luck!!

[rez]

If you can, get in for a biopsy soon, I HIGHLY doubt it will be negative. If your tTG was high positive that means you have significant damage and it' nice for them to have a baseline so they can check for improvement. It can take up to 6 mos. to a year for intestines to heal and blood work normalizes before the biopsy. Good luck.

[happygirl]

In order to have as accurate of a biopsy as possible (and to make it worth your time or money), you are supposed to be ingesting gluten. Ensure that your physician takes multiple biopsies from multiple places.

If you choose not to eat gluten, the results will be:

positive biopsy. Confirms what you already knew.

negative biopsy. this could (and probably is) a false negative, given the positive bloodwork (esp the tTG, which is highly sensitive) AND the fact that you are gluten free, which decreases the places damaged, etc.

Also, something to consider. If you have to switch doctors at some point, and they see a negative biopsy, they might question your diagnosis. I know this from personal experience...my doctor told me to go gluten free (which is incorrect) and five weeks later, I had my biopsy-after positive bloodwork before going gluten free. I have since moved twice, and every doctor just sees "negative biopsy" but doesn't listen to the "conditions."

Either way......your tTG is highly, highly indicative of Celiac. Welcome to our board and let us know what we can do to help!

best of luck!

[Michi8]

You don't say what country you are in but I am in the UK and here if an item has a codex level of wheat in it , it can declare it's gluten-free.

Codex levels in the UK are less than 200 parts per million (of gluten) and these levels are deemed to be safe for coeliacs (i.e not cause damage)

However - alot of coeliacs do react with symptoms to codex -- so caution is needed!!

I would say whilst you are trying to get used to the gluten-free diet it might be best to avoid codex products.

He is in UAE (United Arab Emirates.) Since I'm not in Europe, I'm not really familiar with the codex standards and how product is generally labelled/marketed regarding this ...do you know if the UAE follows those guidelines as well?

Michelle

[tiffjake]

i'm diagnosed to have celiac disease two weeks ago and was also positive in the lactose tolerance test. my serology test showed a positive AGA (anti gliadin), high tTG (anti-tissue transglutaminase) and a normal EMA (anti-endomysial...) i just want to know if these results are conclusive of celiac disease. i was just thinking of having a biopsy done to be 100% sure. your inputs will be highly appreciated.

I decided not to have the endoscopy. I didn't need it to prove to me that I was sick when I ate gluten. I had already had several blood tests (A.L.C.A.T., EnteroLab, Gene testing, and my primary doc's blood work) so the endoscopy wouldn't make a difference to me. That is my personal opinion. Some people want the confirmation. I also found out that my insurance company does not want to insure people with "stomach problems" so I am glad I don't have a "diagnosis" on my official permenant record. All of the testing that I had done was off the record and paid for by ME, not my insurance company. You just have to do what it right for you, depending on what you need. I didn't need an endoscopy to make me go gluten free.

Hope you are feeling better soon!!!

[tiffjake]

will a one month gluten free diet affect the accuracy of a biopsy? i am really depressed now because here in UAE nobody even knows what celiac is that's why it took me three doctors, two colonoscopies, lots of blood, stool and urine tests, ultrasounds, x-rays including ivu before i was diagnosed with celiac after 10 months of exhaustive consultations. the first doctor diagnosed me with IBS, the second diagnosed me with non-specific colitis (he did a biopsy of my colon) and finally the third doctor (UK educated) diagnosed me with celiac but he did not suggest a biopsy of the small intestine.

it is really hard to have this disease in this country since nobody supports it, there is only one shop that sells a few gluten-free foods and to reach there needs a good two hours drive. there is also no support groups here. i just feel lucky to be an asian since our staple is rice but it really troubles me when dining out which seems to be impossible for me now and when i shop for groceries i just have to rely on my instincts when it comes to bottled and canned foods because i don't trust the labelling of products here since people here doesn't know what are the consequences of wheat to a celiac. yesterday i saw a rice cracker with an ingredient of wheat (gluten free) i don't understand how can wheat be gluten-free.

it's only in this forum i felt that i could express my feelings, receive moral support and clear all my confusions.

I am so sorry that you are having such a hard time. I know that most people find it easiest to cook and eat at home. I had my blood tests taken at various stages of gluten free, and I was VERY LOW after one month. I don't know how this would effect the biopsy. Sorry I don't have more information. I wish you luck!

[jhun]

Guys thanks for all the information, I really feel relieved to communicate with people who knows what I'm talking about. Well, yesterday I saw a nutritionist who advised me to do a biopsy just to check the damage and see if there is nothing else wrong with my small intestines but I think I have decided not to have one since its a bit too late and I'm afraid to go back to gluten not because of the symptoms but the damage it will cause me. I'm a month gluten free and my symptoms seems to be improving slowly but I can feel the difference, now the pain in my lower left abdomen is gone, headache is gone, bloating is minimal though I still belch a lot and gassy in the afternoon.

I really appreciate all your help and I'm really glad to be here in this forum though am not glad to be a celiac.