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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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    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
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    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
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