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

Gluten Challenge Misery (Newbie Here)

pain*in*my*gut

Recommended Posts

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hello! I am a newby here....and I need need to vent....

Here is a little history.....I had a bowel resection in 2007 (endometriosis had grown into my bowel, so they removed a small part of it). I then developed complications from the surgery (excessive scar tissue causing bowel obstructions, GI yeast infection, rectal inflamation and bleeding). I was tested for celiac at that time and everything was normal (but on the high end of normal). Then I starting having muscle pain, fatigue, chronic lower back pain and was dx with fibromyalgia. GI symptoms settled down, and for the most part my only complaint was constipation and gas.

About 6 weeks ago I started having this horrible pain in my upper left abdomen, just under my ribcage. Saw my GP, who did a Celiac screen just in case. Low and behold.....POSITIVE! But, only my Deaminated Gliadin antibody was positive (it was 59, normal is 0-19). My TTG IgA was less than 2, which is normal.

I saw my GI doc on 8/1, and he said that my test results for celiac were "inconclusive", and I have to have an endoscopy. I had been gluten-free for 2 weeks, and he said that I had to go back on gluten for a month and then do the biopsy. I was so upset, as eliminating gluten had made my fibro symptoms dramatically better!! Would 2 weeks of being gluten free really effect the biopsy results? I thought it took the gut 6-12 months to heal on a gluten-free diet, I had only been gluten-free for 2 weeks!!

I have since started eating gluten again, and I am getting so sick after eating it! The gas and bloating are horrible, and it feels like my stomach is just so inflamed about 1 hour after I eat gluten that I almost throw up! How am I supposed to do this for another month?? I read where you are supposed to eat like 4 pieces of bread a day, and I can't!!

I would just say screw it...assume that I have Celiac and be done with testing, but I have a 6 year old son, and I need to have an "official" dx so that I can get him checked if I do indeed have it (as well as my other immediate family members, 3 of which have signs of it).

I am going to see my GP next week, and I am wondering if I should see if I can get a second opinion (about waiting to do the biopsy). I am miserable, and I feel like I am being tortured by my GI doc. Surely 2 weeks of not eating gluten can't heal the intestines enough to cause a negative biopsy, can it?

I don't know, what do you all think I should do?

Thanks in advance!

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

Celiac.com Sponsor (A8-M):


Jenniferxgfx Contributor
Jenniferxgfx
Posted

I was "gluten lite" for a bit (6wks tops) before my biopsy, and had a big gluten bender the weekend before, and my bx was negative. You really have to be gorging yourself on the stuff for positive results sometimes. As far as I'm concerned, your lab results are good enough and forcing you to do the biopsy is just cruel and inhumane. :(

rosetapper23 Explorer
rosetapper23
Posted

When I discovered that gluten was the culprit, I gave it up...and never looked back. I did take my son in to be tested, and he tested positive for celiac. That was enough for me and my doctor. My gastroenterologist said I had the most classic celiac case he'd ever seen, and he apologized for all the doctors who had missed the obvious signs since I was 11 years old. I agree with Jennifer--your doctor is being inhumane...and abusive. Regardless of whether or not you go through with the endo, have your son tested for celiac.

gluten free overseas Apprentice
gluten free overseas
Posted

I just went with entrolab.com

I liked it a lot because they test your stool, and you can already be off gluten and still get accurate results. Plus, they do genetic testing and will test for casein, soy, etc. etc. I know it's not widely accepted in the States, but I personally think it's a good option.

Takala Enthusiast
Takala
Posted

Call GI doc back and tell him you're getting too sick on gluten to continue.

Then get genetic testing somewhere else. Sheesh. Genes & symptoms & positive blood test & positive diet response = you are at least gluten intolerant.

Watch the kidlet for symptoms, and maybe get him genetic tested also, after you. He won't automatically get the disease, just by being a genetic carrier of the tendency.

the relatives.... will drive you crazy. Always do your own thing and be proactive about your own health.

Archived

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

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

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • 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.