Really Celiac?

[alyblazey]

HI there-- I was diagnosed withe Celiac disease last year. However, I had stomach troubles for years before. I had constipation mainly, but some bad bouts of diarrea as well. The bloodwork came back positive and then 2 weeks later I had the biopsy--but it was negative. A few months ago I found out my gallbladder wasn't functioning and just got it removed. I started eating a little bit of wheat to see what would happen and so that I could get re-tested. I am getting bloodowkr done this week, but i wondered if this has happened to anyone. Also, is there a certain amount of gluten I need to be getting for the bloodwork to show it--or just any? I really appreciate some advice. Thanks

[KaitiUSA]

Yes, you should eat equal to 2-3 pieces of bread for 3 months prior to testing.

Biopsies can rule celiac in but not out. If you had sporadic damage they can easily miss it or if you were in beginnning stages with no damage it would also show negative. Some blood tests are very accurate.

It also takes time for symptoms to go away after being gluten free. It took me 8 months to get normal again and some people it takes longer and some shorter.

Also, the other problems could have been attributed to being undiagnosed for a while...many other problems can arise.

You also have to be 100% gluten free to get better...no cheating...it's an all or nothing diet. Small amounts as frequent as once a month is just like not following the diet.Also, products like shampoo, makeup, soap, etc need to be checked to because they have high chance of getting into the mouth.

[alyblazey]

Thanks... I spent a year of my life being very very careful--I know I was not getting gluten anywhere. So we will see... The problem is this-- my original bloodwork was messed up a little anyway. My white blood cell count was extremely low so they re-did the test only a few days later and it was normal. This makes me wonder if something was just weird about the bloodwork in general. Also, after a year of the diet, I did not get better at all. I got better for about a month at the beginning, but I realized I was hardly eating then-- and I only feel sick when I eat. So, without any real feeling of getting better, it is just really frustrating... Do I need to eat 2-3 pices of bread a day for 3 months? Will I not get a positive result after only 2 weeks, is that even a possibility? Do you have any resources online I can check out about this--I never heard it took 2-3 m. of eating it before testing. My doc always said I could just start eating and give him a call for testing.

Thanks!,

ALy

[KaitiUSA]

Do I need to eat 2-3 pices of bread a day for 3 months? Will I not get a positive result after only 2 weeks, is that even a possibility? Do you have any resources online I can check out about this--I never heard it took 2-3 m. of eating it before testing. My doc always said I could just start eating and give him a call for testing.

Most doctors are not up to speed about celiac and your doctor is missing alot when it comes to celiac if he is saying to just start eating and then give him a call. Your test will most likely not come back positive if you have been gluten free for that long and just getting on gluten for a short period of time. Yes, you have to eat alot of gluten for an extended amount of time(equal to 2-3 pieces of bread a day for about 3 months). The damage heals with the diet and the antibodies go away...they use tests to monitor compliance with the diet.

[alyblazey]

thanks so much...I know my doc isn't great. I stopped almost everything with him and have gone through my family doc recently...i will see if i can find a new GI... thanks for the advice

[Guest BellyTimber]

I think there is very little indeed I would differ with Kaiti about, and I'm generally less expert.

Coeliac UK say at minimum 4 slices or equivalent every day for at least 3 months but some members have commented from experience that it was too little to give them a positive result. Either they are not going to show enough damage anyway or - more likely - once having been gluten-free the damage that would have been visible may have dwindled.

Someone was just posting on another board yesterday, go for it, standard pies, nuggets, pasta, cakes as well as the bread. (Sounds like my old diet!) Hopefully the accompanying ingredients would make these palatable - plenty of jam & chocolate!

Will your doctor give any needed support/cover for illness incurred by and while undertaking this "challenge" and an indefinite recovery period afterwards? My acquaintances have reported feeling ill not only throughout the challenge but for 3 months after reverting to gluten-free after the challenge, and that was having felt well during their previous gluten-free spell.

(There is also a debate whether 3 months' challenge is long enough)

Perhaps to those of us whose original symptoms have carried on, the challenge may be no worse? It seems to me a gamble, an unfathomable conundrum.

But as to your continuing symptoms, one year is very often not long enough for symptoms to improve. Most people get well for a week or two then worse again. After nearly 3 years as gluten-free as I can be, I am in some ways slightly better, in some worse. Most people are a fair bit better in 2 - 3 years though (some younger people in 6 - 18 months), and carry on getting better & better after that.

So persevering with the gluten-free diet would definitely be worthwhile in the long term - it's only that you need serious professional support if you are going to have a serious challenge - long enough and in enough quantities.

I am very sensitive about the gluten challenge issue because my doctor didn't send me for the biopsy before he told me to go gluten-free (and hadn't had all the right blood tests either). I am not wanting to be negative but to say to some extent how it is. Also I'm not aware of having had gall bladder trouble ...

[FaithInScienceToo]

But as to your continuing symptoms, one year is very often not long enough for symptoms to improve.  Most people get well for a week or two then worse again.  After nearly 3 years as gluten-free as I can be, I am in some ways slightly better, in some worse.  Most people are a fair bit better in 2 - 3 years though (some younger people in 6 - 18 months), and carry on getting better & better after that. 

<{POST_SNAPBACK}>

Thanks for pointing that out, BT -

I didn't find out about 'having' celiac disease until age 47 1/2 (9 months ago)...after at least 20 years of 'it,' I will have to be more patient with my body...and hopeful that 2 years from now, I can put on muscle weight more easily ;-)

Gina

[Claire]

HI there-- I was diagnosed withe Celiac disease last year. However, I had stomach troubles for years before. I had constipation mainly, but some bad bouts of diarrea as well. The bloodwork came back positive and then 2 weeks later I had the biopsy--but it was negative. A few months ago I found out my gallbladder wasn't functioning and just got it removed. I started eating a little bit of wheat to see what would happen and so that I could get re-tested. I am getting bloodowkr done this week, but i wondered if this has happened to anyone. Also, is there a certain amount of gluten I need to be getting for the bloodwork to show it--or just any? I really appreciate some advice. Thanks

<{POST_SNAPBACK}>

You need months not weeks on gluten if you want to insure accuracy. It is a risky way to prove a point. There are other tests that do not require you to be gluten free - i.e. Enterolab stool sampe test and Kimball Labs - genetic testing. You do not get over celiac. The gut may heal and the antibodies disappear but you still have celiac. Eating gluten to prove it is a tough way to go. Claire