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Biopsy- Gluten Free One Year

Magdeliscious

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Magdeliscious Rookie
Magdeliscious
Posted

Hello everyone,

so sorry to be beating a dead horse, but Ive looked on the threads and I still have some questions about endoscopy/biopsies.

I have been gluten-free since June of 2004......I still experience diarrhea and constipation as well as the mental symptoms of celiac..I also have the infamous skin blisters that were once full of puss one year ago.

The skin blisters have cleared up, and my bloodwork is currently negative. But with the diarhhea coupled with the fact that I had the celiac specific skin blisters (dermitits herpataformis), I REALLY still think I have celiac Diseas!

What if the biopsy is negative?? Or what if they cant find anything??

Im so nervous to go back to the drawing board...

or worse

to have to start eating gluten again......

Anyways, any thoughts are apprecaited!!

Magdalena

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KaitiUSA Enthusiast
KaitiUSA
Posted

If you want a biopsy now, you should be on gluten for a good 3 months prior to testing because otherwise it may come back negative.

You need to be on gluten throughout testing.

Have you ever had the full celiac panel done? It consists of 5 tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Did they diagnose you with celiac? If so, how did they? Did they do any testing at all?

If you are not completely off gluten or have frequent accidents then you may still be getting symptoms. Have you checked things such as shampoos, soaps, lotions, perfume, makeup, etc. Things like that that would be able to easily get into your system should be checked.

Also, it takes a bit of time to heal I know I wasn't back to normal until about 8 months gluten free with alot of improvement by month 3. Some people don't feel better for up to a few years. It depends on damage done, etc.

Have you also been tested for other foods intolerances?

Jnkmnky Collaborator
Jnkmnky
Posted

Do you think you are having gluten accidents? Are you POSITIVE you're eating gluten-free? Maybe you should simplify your diet for one entire month and eat NOTHING complicated (simple ingredients you are SURE are gluten-free). See if you feel better doing that. If you do- reevaluate your past food choices. Look for unknown gluten. If you feel just as bad as ever, consider other problems as the cause.

cdford Contributor
cdford
Posted

Unless they are looking for something other than celiac disease or you had a great amount of damage initially, the expense and trouble may not be worth it. If you have been even close to gluten-free for a year, the test will not be valid for celiac disease diagnostic purposes. Even after I had been badly glutened and hospitalized, mine came back negative because I had been gluten-free for so long.

Carriefaith Enthusiast
Carriefaith
Posted

Are talking about a follow up biopsy? If so, this would be useful if you aren't feeling better since you will be able to see if there is still damage occuring in the small intestine.

If there is damage, your doctor will probably get you to re-evaluate your diet. It is VERY easy to get cross contamination, especially if not everyone in your house is gluten-free. Trust me on this one ;) Also like Kaiti said, double check every product that goes in or near your mouth, like suncreen, conditioner, toothpaste, ect.

If there isn't damage in the intestine, then I would suggest that you could have other food intolerences. Many celiacs cannot tolerate dairy or soy products. I have very bad reactions to dairy products and they are quite similar to my gluten reactions minus the brain fog and the pain.

Magdeliscious Rookie
Magdeliscious
Posted
  • Author

Thanks to everyone for their replies. i really appreciate your input!

This will be my first biopsy, and I am pretty nervous that it will be negative.

June 2003: IgG (45) , everything else negative

June 03-July 04: Wheat free

July 04-August 04: Ate a lot of wheat because was travelling in S. America..developed skin blisters with puss....

Sept 04- now: Gluten free, sugar free, dairy free....feeling much better, but still have diarhhea on occasion and loose stools...

May 05: Same blood work, but all came back negative!

SO basically, I am doing a lot better for the most part. Except for the DEBILITATING brain fog, lack of sense of smell, low libido, lethargy and dehydration.

If my lining is really healed, could there still be a possibility of malabsoption?? I am not even on a multi-vitamin......

I am doing the endoscopy regardless (its covered under my health insurance). And maybe they can find if there is any inflammation or anything??

Thanks again,

:)

Magdalena

P.S. Do people do the "gluten challenge" for the sole purpose of being officially diagnosed?? because seriously, i just KNOW that i would feel awful if I started eating gluten again.......I dont know if i need a diagnosis if it means feeling TERRIBLe for 3 months...

KaitiUSA Enthusiast
KaitiUSA
Posted

If you have been gluten free that long it's very likely the biopsy will come back negative. I noticed you also had bloodwork in May...that would also stand to reason why it came back negative as well.

Have you been checked for other intolerances as well?

Also, if you were getting gluten into your system through products, as I mentioned before, that can make symptoms appear. So make sure you double check everything and approach it from every angle so there is no question in mind about it.

Also, there are advantages and disadvantages to an official diagnosis. I know since I have a diagnosis it may be harder to get insurance in the future.

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Diosa Apprentice
Diosa
Posted

These are just some initial thoughts I had. Are you eating a lot of rice or soy? I know in my case soy will give me the brain fog, bloating and runny stools. Rice is as bad as gluten for me, but it might be something that's affecting you. Even corn could be culprit.

You also mentioned you are sugar free. It's possible to get these reactions from certain sweeteners. Any of the sugar alcohols (malitol, sorbital, glycerine) can cause stomach upset, pain and diarrhea. In fact, many people can't tolerate them. I'm lucky I can, but Splenda makes me really ill and causes me pain.

For me, it's been trial and error. I eat a meal that's all gluten-free with simple ingredients (steak with a herb rub for example), a veggie, and then a suspect ingredient. See how you feel. If you feelicky, chances are high the suspect is something your body can't cope with.

Best of luck to you. :)

William Dickey, PhD, MD Newbie
William Dickey, PhD, MD
Posted

Not everyone on gluten-free has healed after a year, so a biopsy might show abnormality- maybe not villous atrophy, but an excess of inflammatory cells (lymphocytes). The possibility of other bowel disease causing diarrhea, such as a colon problem, needs considered, though alternating constipation with diarrhea in the absence of bleeding from the back passage, anemia, weight loss, or night-time diarrhea may be due to irritable bowel syndrome

  • 2 weeks later...
Magdeliscious Rookie
Magdeliscious
Posted
  • Author

So, my biopsy came back "negative".

My symptoms have GREATLY improved since gluten-free, but still have brain fog!

anyways, i really really really think i have celiac disease but ever since i decided to go gluten-free, everything is negative (which is a good thing!), but now no doctors believe me!!!

argh..

is there any other test that can show celiac disease? Maybe the Gene test? Its so frustrating because im so glad my symptoms have decreased, but, will I ever be officially diagnosed??

Kasey'sMom Enthusiast
Kasey'sMom
Posted

I know you must have mixed emotions with the biopsy results. Since I'm still new to celiac disease maybe someone else can share the statistics and details of gene testing.

I think Katies' recommendation of testing for other food intolerances is a wonderful idea. My daughter had rashes and they couldn't decided what they we're "maybe eczema and maybe psoriasis." Her blood work was inconclusive for celiac disease but she has responded well to the diet. We found out that she has many food intolerances in addtion to gluten. Her skin, temperment, and digestion have reacted well to to changes in her diet. For us gluten intolerance was a pc. of the puzzle that helped us look at her other aspects of her health.

Hope you will soon find the answers you're looking for. :)

KaitiUSA Enthusiast
KaitiUSA
Posted
So, my biopsy came back "negative".

My symptoms have GREATLY improved since gluten-free, but still have brain fog!

anyways, i really really really think i have celiac disease but ever since i decided to go gluten-free, everything is negative (which is a good thing!), but now no doctors believe me!!!

argh..

is there any other test that can show celiac disease? Maybe the Gene test? Its so frustrating because im so glad my symptoms have decreased, but, will I ever be officially diagnosed??

The reason why everything is negative is because you were gluten free so you were not able to get accurate readings. Any doctor who knows a thing or 2 about celiac will tell you the same thing.

The gene test will tell you if you have one of the main celiac genes. If you do not then you are 99.9% likely to not have celiac. However, there are other genes for gluten sensitivity so you may still have a problem with gluten without celiac.

Is there a need to be officially diagnosed though? I know for me , having an official diagnosis, is bad for me because Insurance for me will be harder to get in the future.

Hang in there

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