Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Could It Still Be Celiac


esmee

Recommended Posts

esmee Newbie

Hi everyone,

I have been reading here for some time, but never posted before.

So here goes, and I am sorry if this is a long post :(

Since 2001 I have thyroid troubles (hashimoto


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator
;) hi esmee--i cant say you are barking up the wrong tree and going gluten free cant hurt you--living without these grains will not cause you damage and it may be the answer you are looking for---you dont have to be full blown celiac to have gluten intolerances--i am not a doctor diagnosed celiac, although my sister is and that increases my odds so much more, also my dad and gluten-free gave me back my life--i will never go back :D deb
llj012564 Newbie

I agree with Deb , the diet wont hurt you but you have to be strict or you wont know if it is helping you. You may also want to do the genetic testing if you think that you have to know 100% . For me my blood test was positive and the diet made such a difference I didnt see a need for the other tests. Just an added note .... when I started the diet I went very basic only fresh to start then added things one at a time to see how I reacted to them. I had to do this because I knew I had trouble with dairy and thought maybe there would be other things that bothered me so I started slow with only fresh foods. I discovered I ate really unhealthy b4 <_< Its much better now B) Good luck

tarnalberry Community Regular

While the chances are lower with the negative blood tests, they're still not zero. And only taking two biopsies ... well... that test isn't going to tell you much other than you don't have a raging case of celiac that's destroyed your entire collection of intestinal villi. <_<

The symptoms certainly could be consistent with celiac, but I'm sure there are other things as well. You might consider trying to go gluten-free for two or three months and see if you feel better. If you're uncertain, you could do a gluten challenge (eat some shredded wheat, or some other simple wheat product, not bread (which has yeast and other potential issues)) and see if that causes symptoms again. Of course, it's a very personal decision. Good luck!

celiac3270 Collaborator

Whether or not it's celiac, it can't hurt to try the diet. Numerous here don't know for sure that they have celiac disease, but the diet cleared up their symptoms and that's enough. Try it for a couple of months and see what happens...if you get better with the diet, then regardless of whether its celiac disease or a wheat allergy or whatever, you've discovered what is causing these symptoms----well, what FOODS and INGREDIENTS are causing the symptoms, if not the specific allergy or intolerance

Carriefaith Enthusiast

Even if you don't have celiac disease you may be gluten intolerant or wheat intolerant. You can get a blood test that checks for wheat intolerance. I think the diet is worth a try. Also have you been checked for crohn's disease?

esmee Newbie

Hi,

Thanks for your replies!

After 5 days of being gluten-free I messed up again in a restaurant, and with Christmas coming up I have decided to give it a rest for now, but to give it a serious try in january. It would be so much easier if I had a positive test, now it is just guessing!

So, for now I am back on pasta and bread, but I will go gluten-free in january and see what happens.

Thanks,

Esmee


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,059
    • Most Online (within 30 mins)
      7,748

    Sarah Miranda
    Newest Member
    Sarah Miranda
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...