Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Biopsy- Gluten Free One Year

Magdeliscious

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.