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

Maybe I do, Maybe I don’t have celiac

pokey449
 Share

Recommended Posts

pokey449 Enthusiast
pokey449
Posted

I’ve had blood tests and biopsy looking for celiac. The blood test was negative which I understand doesn’t mean I don’t have celiac. The biopsy showed mild villi blunting which I understand can be caused by things other than celiac. Earlier this summer I had bloating cramping gas nausea and was diagnosed with SIBO. I had two rounds of antibiotics and the 2nd time knocked the SIBO back. I’m not having any bloating or cramping now. No diarrhea or constipation. My other sxs is fatigue/malaise but no other celiac sxs. However I keep having nausea which my GI doc thinks is due to me going off my PPI that I was on for 17 years. So, I have no idea if I have celiac or not and the only thing I know to do is try a gluten free diet and see if I start feel better 

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

Celiac.com Sponsor (A8-M):


raspberryfirecracker Contributor
raspberryfirecracker
Posted

Whatever you have, I hope your body can recover from the damage it's already caused, and that you won't sustain more.

pokey449 Enthusiast
pokey449
Posted
  • Author
23 minutes ago, raspberryfirecracker said:

Whatever you have, I hope your body can recover from the damage it's already caused, and that you won't sustain more.

Me too. Thank you. 

GFinDC Veteran
GFinDC
Posted

That's a good plan Pokey.  Just be patient as going gluten-free is not an instant cure.  If it was they'd sell it in pills at the pharmacy! ;) 

Some other things you should consider dropping from your diet IMHO are:

Sugar/carby foods.

dairy

soy

oats

You can always add these foods back to your diet one per week after 6 months to see if they affect you.

pokey449 Enthusiast
pokey449
Posted
  • Author
28 minutes ago, GFinDC said:

That's a good plan Pokey.  Just be patient as going gluten-free is not an instant cure.  If it was they'd sell it in pills at the pharmacy! ;) 

Some other things you should consider dropping from your diet IMHO are:

Sugar/carby foods.

dairy

soy

oats

You can always add these foods back to your diet one per week after 6 months to see if they affect you.

Thanks GFnDC. I’m already on a low FODMAP diet and have dropped off those sugars and dairy. gluten-free soy sauce does not seem to bother me. I made the switch to certified gluten-free oatmeal and so far that seems ok. In fact soon after I went to the gluten-free oatmeal I seemed to start feeling better. As far as I know?? the regular run of the mill oatmeal was the only gluten laced food in my diet as I’ve cut out other sources that I know of. I’m reading labels more closely. This is a major learning process 

pokey449 Enthusiast
pokey449
Posted
  • Author
On 2/6/2021 at 3:25 PM, pokey449 said:

Thanks GFnDC. I’m already on a low FODMAP diet and have dropped off those sugars and dairy. gluten-free soy sauce does not seem to bother me. I made the switch to certified gluten-free oatmeal and so far that seems ok. In fact soon after I went to the gluten-free oatmeal I seemed to start feeling better. As far as I know?? the regular run of the mill oatmeal was the only gluten laced food in my diet as I’ve cut out other sources that I know of. I’m reading labels more closely. This is a major learning process 

OK my 2 blood tests are negative, but my biopsy showed mild villi blunting. I've gotten no clear guidance from my GI doctor one way or another, other than his nurse saying the blood tests were negative for celiac. I'd like to definitively know if I have celiac or not. Are there other tests I could have that for sure will tell me if I do/don't have it???

pokey449 Enthusiast
pokey449
Posted
  • Author

OK my 2 blood tests are negative, but my biopsy showed mild villi blunting. I've gotten no clear guidance from my GI doctor one way or another, other than his nurse saying the blood tests were negative for celiac. I'd like to definitively know if I have celiac or not. Are there other tests I could have that for sure will tell me if I do/don't have it???

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

When you say your blood tests were negative, can you share your values, and the range? Sometimes people have high values that are just below the cut off, and combined with mild villi blunting, your ongoing symptoms, and the fact you were on PPI's for so many years, to me those exact levels would be important. At the very least you may have non-celiac gluten sensitivity.

pokey449 Enthusiast
pokey449
Posted
  • Author

IGA  was 327mg/dL and TTG/IGA   was 0.4U/L 

Scott Adams Grand Master
Scott Adams
Posted

Great, but do you happen to also have the scale/cut off for a positive reading? Each lab is different, so knowing this would be helpful.

pokey449 Enthusiast
pokey449
Posted
  • Author
3 hours ago, Scott Adams said:

When you say your blood tests were negative, can you share your values, and the range? Sometimes people have high values that are just below the cut off, and combined with mild villi blunting, your ongoing symptoms, and the fact you were on PPI's for so many years, to me those exact levels would be important. At the very least you may have non-celiac gluten sensitivity.

My results for both blood tests were well within the normal range for both tests. I’m a former biomedical research technologist so I’m pretty sure I didn’t misread the results and normal ranges. 

Scott Adams Grand Master
Scott Adams
Posted

Just keep in mind that only around 1% of people have celiac disease, but ~10% have non-celiac gluten sensitivity, and there is currently no screening for it.

pokey449 Enthusiast
pokey449
Posted
  • Author

Scott. Yeh I recall seeing #s like that on having celiac v gluten sensitivity. And as I understand one can have villi blunting for reasons other than celiac and not be gluten sensitive??? Would being on a PPI for 17 years cause blunting? How about having had SIBO? At this point I’m not sure what to do??? Do I assume I have celiac or gluten sensitivity and go gluten free for a period of time and see if I improve then test it with injesting gluten. Stay gluten free?? Don’t stay gluten free and see what happens?? 

Scott Adams Grand Master
Scott Adams
Posted

While there are other causes of villi blunting, the most common cause is probably still gluten, although there isn't a lot of research that compares the rates of villi blunting and their causes. We just did this article on this topic:

 One angle for you might be to go gluten-free for several months, and see if your doctor is willing to do another biopsy to see if the condition improves. If it does improve, then you likely have your answer.

pokey449 Enthusiast
pokey449
Posted
  • Author

I’ll consider that approach 

Placey09 Newbie
Placey09
Posted

Another thought- when doing your elimination diet- did you try eliminating egg for the 14 days?  I ask because ten years ago my doctor had me do an elimination diet to determine what might be causing my ' IBS' , well egg was the major cause ( or so I thought it's one of the two- gluten being the  other). Silly me didn't think to eliminate bread/ gluten  afterwards because I was feeling better- not 100% but better. Plus I'm French why would I eliminate bread lol! Then just this year after a neurologist tested me for Celiac's as well as other things ( I had a mini stroke last yr and have unexplained numbness) discovered I have Celiac's along with many vitamin deficiencies. My Dr was puzzled as she thought I had eliminated bread - yes I had  symptoms so should have followed up with her again but was a bit embarrassed by symptoms and never seemed to have the time since my children were young then. Bottom line try eliminating eggs- I had the same symptoms as with my Celiac's. Worse with gluten but egg intolerance is very similar reaction.

pokey449 Enthusiast
pokey449
Posted
  • Author

Placey. Eggs don’t seem to bother me. I’ve been in a low FODMAP diet for 6 months and I thought gluten free as well except I just recently learned the oatmeal I was eating probably wasn’t gluten free so I switched to certified gluten free oatmeal. Sxs have improved though I still have some nausea but then I have had dyspepsia for years. I got off the PPI I’d been on for 17 years when I was diagnosed with SIBO this summer. I got the SIBO knocked back but kept having major nausea. My GI doc thought it was the return of my dyspepsia so  put me on famotidine. About the same time I started the famotidine I changed to the gluten free oatmeal. Hard to tell which helped improve my sxs. However I’m still having some nausea, but much improved It’s really hard to sort out all the cause-affect  aspects of all this GI distress: SIBO, gluten, dyspepsia, PPIs, diet etc. All I can say is my sxs are way better than they were 6 months ago but still not totally symptom free. I’ll keep working at it. Had a CT scan of my abdomen yesterday. No nasty findings thankful. Some diverticulosis but I’ve known about that for some time. At least I don’t have diverticulitis 

Wheatwacked Veteran
Wheatwacked
Posted

"The truth is, restoring normal stomach function after extended PPI treatment is a rocky affair marked by successes and setbacks. "The Challenges and Pitfalls of PPI Withdrawal | The Lifestyle Matrix. It seems that getting off long term PPI use is as difficult as getting off prednisone.

pokey449 Enthusiast
pokey449
Posted
  • Author

Wheatwacked. I read the article you referenced. I think I had read it before. It like other articles I’ve read regarding weaning off PPIs continue to baffle me. All of them talk about taking your PPI every other day or so intermingled with taking H2 antagonists and spread out your PPI dose more and more. Such a protocol is difficult for most people. I had my PPI compounded into a liquid form so I could make small cuts every so many days. I decreased my dose by 2mg every 4-5 days. I took 2 months to get off 30mg of lansoprazole(Prevacid). I had no rebound doing it this way. My problem is the dyspepsia came back after 5 months time causing nausea day & night and thus I ended up back on famotidine. The nausea has been greatly reduced though I have to be careful of what I eat. A cup of coffee can fire things up- the hardest thing for me to give up.  Hopefully I’m going to eventually get everything calmed down and get off the famotidine as well. It’s all a struggle but I think I’m slowly getting ahead of it. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,683
    • Most Online (within 30 mins)
      7,748
    Jean Tonkin
    Newest Member
    Jean Tonkin
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.