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Fibro Or Celiacs


marys2012

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marys2012 Rookie

I was diagnosed with fibromyaglia in 2008. I was offically diagnosed with ibs in 2012; unoffically in 2008. I have been through a lot. This includes surgery, physical therapy, and many medications. Tomorrow I meet with my gastro doctor about a possible positive blood test result for celiacs. Has anybody else besides me been through heck and back? I'm so scared I will get a negative biopsy (assuming my doctor is willing to continue with to a biopsy based on my blood test results). What have you guys been through? Was it hard? I don't have chronic diarreah like a lot of ceilacs but have a lot of other symptoms. The test I tested positive for on my bloodwork was a Deamidated Gliadin Abs, IgA (it was 76-above 30 was considered high). Just wanted to get some input. I am only 34. My problems started was I was around 27. I was the kind of person other people though had a good future ahead of them. It hasn't turned out that way.


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Yup Apprentice

Hi there!

I hope you find the answers you're looking for. I'm seeing one of the top Fibro docs in my city. She gets her patients off gluten and dairy. 90% are lactose intolerant. She also has them cooking with cast iron and using all natural fragrance free products in their homes.My quality of life has greatly improved.

mushroom Proficient

You still have a good future ahead of you, now that you are heading down the right path. That IBS path, as you have found out, doesn't lead anywhere, and it is a garbage diagnosis :blink: and just means that your doctor has not found out what is really wrong with you, in my book. Your deamidated gliadin blood test was strongly positive for celiac disease and this sounds like the most likely cause of your problems. Many people with diagnosed fibromyalgia and other problems even have their symptoms improve/clear up on a gluten free diet and are often able to ditch many of their medications. :)

Good luck on your appointment with the gastroenterologist. He will probably want to do an endoscopy with biopsies to confirm the celiac diagnosis. The good news is that even if that test turns out to be negative (maybe not yet enough damage to show up), going on the gluten free diet may well get rid of all your symptoms, so as soon as you have had the endo do give the gluten free diet a good three month trial.

marys2012 Rookie

I will do whatever it takes. If you knew me, I hope you would see someone with potential. I can't give up! Thanks for the support. I really need it now!

pricklypear1971 Community Regular

I will do whatever it takes. If you knew me, I hope you would see someone with potential. I can't give up! Thanks for the support. I really need it now!

I prefer to think of myself as a late re-bloomer :).

Cara in Boston Enthusiast

I went through 5 years of seeing various doctors and none could figure out my strange symptoms. I had classic IBS symptoms, but also dizzy spells, numbness in my hands and feet, and heart palpitations (so I was seeing three different types of doctors and they were not communicating with each other.) When my son was diagnosed with Celiac and I started reading about it, I realized all my symptoms could be explained by this one thing . . . (and I am not a crazy hypochondriac as my doctor was now suspecting!). My blood test was positive, but my endoscopy was negative.

Since my son was gluten free, I started the diet too and ALL MY SYMPTOMS WENT AWAY. Along with ones I didn't even know I had (headaches, seasonal allergies, hair loss, sleep issues, no more meds for GERD, etc.) I just thought I was getting old and worn out.

Strangely, now when I accidently have gluten, I get joint pain and all over body aches - something I never had before.

Your blood test is positive. If your scope is negative, it is probably because you do not have enough damage yet, or they tested the wrong spots. As soon as you are done, go gluten free and get ready to feel better. The positive blood test is GOOD NEWS.

I felt better in two weeks and MUCH better after three months . . .

Cara

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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