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Cd, Fibromyalghia, Food Intolerances/allergies

Captain Obvious

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Captain Obvious Newbie
Captain Obvious
Posted

Ok, so I'm a diagnosed celiac with years of celiac disease diet - first started in 1999. I'm certain that my diet no longer contains gluten and has not for at least 2 years.

Since going gluten free though I've developed several other food allergies/intolerances - milk, eggs, citrus, various preservatives, etc.

Here's the kicker though - one aspect of the reaction spectrum that my body has to all of these foods is severe bone, muscle pain - I mean crippling that takes 2 weeks to clear and it seems to be getting worse - like scary worse. I got diagnosed with fibromyalghia, but it seems to go beyond that - I experience actual muscle damage - it literally feels like muscles are being torn from the bone even when I make the simpliest of movements. And, in fact, it seems that they are as my injuries take weeks/months to heal.

Anybody else out there like this? Are we looking at some other sort of connective tissue disorder here? Are the other food allergies/intolerances going to fade? Or get worse - they seem to be getting worse... Please don't say see a doctor, you guys are the pros, I haven't met a doctor yet that knows 1/3 as much about this stuff as I do and I'm out of money. This sucks. It was bad enough giving up gluten products, now milk, eggs, and all sorts of other stuff. Oh yeah, I seem to be allergic to just about every sort of pain killer there is so all I can do is moan in bed and pray for sleep. Starting to think I'm some sort of monk or something -

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gf4life Enthusiast
gf4life
Posted

Hi Captain Obvious,

I noticed no one had responded to your post and as I was reading it the first thing that I wanted to ask was what do the doctors say? Of course then you said not to say go to the doctor, so I'm not sure what to say. It does sound like there is something else going on besides celiac disease. Sure we can heal from the intestinal damage, but that does not make us immune to other illnesses. My son is 7 and has Epstein-Barr Virus (for most of his life-he is in remission) and he also is being tested for Celiac (since I have it and he has always been sickly), as well as being tested for other genetic disorders causing his recurrent fever disease (one of those diseases there is only 180 diagnosed cases world wide!). I think to myself, what are the chances of him having two genetic disorders. But then it would explain his constant recurrent illnesses.

The allergy/intolerance thing is common. It may be that you did not develop the other intolerances after you stopped eatuing gluten, it may just be that they were finally recognizable. See the gluten damage masks other intolerances and once we start to heal your body is able to get the message through that you are eating something else it doesn't like. I am also intolerant to all dairy (casein to be exact) and I am alleric to soy. I suspect I am having a problem with yeast, and tomatoes and potatos cause me joint pain. I am only allergic to morphine, so I guess I am fortunate, but there should be someone out there who can help you figure out what is going on in your body. There are many others here that are intolerant/allergic to many different combinations of foods that you would think anyone should be able to eat, but you never know.

I hope you are able to find out and stop the tissue damage. I'll be praying for you.

God bless,

Mariann

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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