Jump to content
  • 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):

Hi All-- Question About Going From Sensitive To Intolerant


joanne + Tom

Recommended Posts

joanne + Tom Newbie

HI I am new to this forum and so glad I have found this!!!

I am wondering something about celiac disease---

I want to get the biopsy and labs done but my insurance won't pay

I went on a gluten free diet and did well for 3 months

no severe pains, diarrhea etc.

I cheated the other night and ate about 4 little pretzels and have been sick since.

including horrible heartburn.

is it possible I have become terribly sensitive to gluten since being gluten free for 2 months?

I used to have episodes about every 3 days--- ( not good I know)

but in my 20's I was only episodic about every 2-3 months.

it got much worse over the years.....

thanks so much to you all

=================================


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



Celiac.com Sponsor (A8-M):



Harpgirl Explorer

I'm rather new to this (only been gluten-free for a month), but I'm finding myself becoming more sensitive as well. And I've read from other posters that their accidental glutenings make them sicker for longer the longer they are gluten free. I too had symptoms years ago, but I never knew they were celiac till now. I began to have persistant severe cramping (among other things) about 2 months ago prompting me to look into celiac. A gluten-free diet fixes this.

I've also read that there are triggers that set it off like stress, pregnancy, surgery, etc. I've had 2 c-sections and knee surgery within the last 2 years. lol!

Takala Enthusiast

Yes, it is possible that you are becoming more sensitive, to the point of full blown intolerance, over time.

Unless you have been eating a full gluten type of diet for months, chances are your medical blood tests won't show a reaction and the biopsy may not, either, then you are still feeling very sick while eating gluten, but officially "not" gluten intolerant - it happens. Some rocket scientist a few years ago decided to test me for celiac antibodies after I had been off of it for years on an all purpose blood workup- the medical office help calls me and tells me, great news, you're not a celiac.... well, duh, after 5 years I would hope that it wasn't showing that I was eating gluten, thank you, and I have no intention of doing so. I went back and had a nice convo with them again- they get that I'm not ever eating gluten, but as I have explained to them, I'm almost a perfect zero for zero on any blood test as I'm also sero negative for arthritis inflammation, etc, and Hades is freezing over before I would deliberately make myself ill, so it's no use trying, even to appease the Insurance Reimbursement Gods.

You can get yourself tested for the genes that show you fall in the class of gluten intolerant or celiac "carriers and potential developers of it" if you are curious. I am already a member of the ethnic groups which are high probability, and have enough family history of related problems that I don't think this could be something else.

The best way to stop cheating once you've identified a problem food, is to just stock up on the best gluten free snacks you can find in whatever sort of food category appeals to you, and get rid of the ones you shouldn't be eating. Also be sure you are taking gluten free vitamin and mineral supplements, because if you are getting your nutrients it helps stop cravings.

gailc Newbie

is it possible I have become terribly sensitive to gluten since being gluten free for 2 months?

---------

YES!!

I was gluten free for two months except for some salad dressing which gave me cramps--a little soy sauce.

Then I decided to eat gluten for blood tests and biopsies. 1/4 of a teaspoon of a cookie threw me into a bad allergic reaction. First time in my life I had an allergic reaction to food. Hard to breathe, throat hurt, earache and clicking, and nose running, then a half hour later I had the gastro response of cramps.

I was diagnosed with allergy to wheat and oats about 50 years ago but never had a reaction, or so I thought.

Strange thing I ate some more later that night because I was determined to get tested and I had no reaction to a half bag of the same cookies.

Unfortunately nobody told me I had to be eating gluten for the blood test and so it convinced the doctors I didn't have Celiac Disease--the tests were bogus.

I was told that months of not eating gluten wouldn't make a difference in the biopsies and the biopsies are taken during the colonoscopy at the low end of the small colon.

WRONG on both counts, I may change my medical provider.

I told them I didn't want the biopsies becaue by that time I was off gluten for 4 months and I had done my research. He took them anyway as proof I did not have the disease.

A couple days ago I ate 3 ice cream cones (gluten-free cones and vanilla and mint chip)to test my lactose intolerance(previously very severe symptoms for that) and

GUESS WHAT??? No reaction to lactose. I'm eating ice cream 3 times a day now. No pill, and no reaction.

I googled and could only find two reasons for remission of Lactose Intolerance--gluten-free Celiacs and pregnancy. In very rare other unexplained instances people go into remission but VERY RARE. Also some very severe gastro problems with severe treatment.

At 65 I'm certainly not pregnant and I have not been treated for some severe gastro illness (except gluten-free diet).

Does anyone know of another reasone to go into remission?

I'm convinced but I will never knowingly eat gluten again.

I now have to carry an epi pen because the 3 times I had the allergic reactions I got worse each time.

Hope I never have to use it, really thick 3 inch needle./and the cost of an ER visit.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...