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Beginning To Suspect Something Is Up
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Hello everyone-

I have been reading this forum for the past couple of weeks and wanted to post while I wait for my blood test/Enterolab test/DNA test. It's been very helpful.

I'm beginning to suspect I am intolerant or sensitive to gluten, or possibly have celiac. I have not stopped eating gluten. Yet.

Here are my symptoms:

- Ferritin level of 4. Four. For several years.

- Bloating, extreme gas, large stinky stools that float, uncomfortable feeling in abdomen for hours (not after every meal, but many meals).

- Vitiligo that has emerged in the past year

- Irregular periods

- Asthma

- Geographic tongue

- Dry skin (I live in Florida where it is humid)

- Fibroids

Does anyone have any thoughts? I would appreciate any feedback. I'm preparing to do a gluten-free trial very soon.

Thank you all for your help and have a good evening.

Tam

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I received my test results...and now I need more testing.

Basically the Endomysial Antibody IgA, the tTg IgA and the tTg IgG tests were normal.

But my total Immunoglobulin A Serum was low at 72 (my lab has a range of 91-414 as normal).

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Some of your symptoms do match up to a gluten intolerance; I'm sorry you haven't been feeling well.

Witha a low serum IgA, you are really limited in what celiac tests will work for you. You could be a celiac but because you are low in IgA, those tests won't tell you much if anything. The only tests you haven't done yet are the DGP IgG and the endoscopic biopsy.

Once you are done your testing, I think it's wise that you have decide to do a gluten free trial. As you probably know, Non-Celiac Gluten Intolerance (NCGI) is much much more common than celiac (another form of gluten intolerance) and every bit as nasty and uncomfortable. When you go gluten-free, please try to give it a few months. Some of my symptoms (joint pain) didn't get better until after 6months on the gluten-free diet.

Some of your symptoms sound like hypothyroidism too (I only mention it because I have this and some symptoms sound familiar). If after you've looked hypothyroidism (or hashimoto's) you want to do some testing there, request:

TPO Ab (should be about non-existant)

TSH (should be near a 1)

Free T4 and Free T3 (should be in the upper 50-75% of your lab's reference range)

Best of luck to you. I hope you find some answers.

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hi tamlush

im afraid i cant help you with the results - im pretty new here myself. but just to say welcome and hope you get the answers your looking for. not everyone on here is diagnosed celiac, theres a few of us who are self diagnosed.

my results all came back normal- basically all they found was reflux!!! im waiting for allergy tests but they take ages here (uk) so i went gluten and dairy free. you need to check what extra tests they are doing because you need to be eating gluten to test positive for it. if you go gluten free now you could scupper your chance of a positive diagnosis.

ive not found the diet too bad and the upside is - no more reflux and stomach is not as bloated oh and no anxiety :)

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hi

soz when i replied there was no other post showing, good luck with everything :)

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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