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Fibro Or Celiacs

marys2012

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marys2012 Rookie
marys2012
Posted

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
Yup
Posted

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
mushroom
Posted

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
marys2012
Posted
  • Author

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
pricklypear1971
Posted

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
Cara in Boston
Posted

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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    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

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      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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      Oats gluten free?

      By Lori Lavell · Posted

      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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