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The Two Phrases I Don't Want To Say Anymore...

Tabasco

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Tabasco Apprentice
Tabasco
Posted

It seems that for as long as I can remember I have said "My belly hurts" and "I'm so tired". Almost every day of my life. :( And ya know, it kind of sucks.

To think that just changing my diet could possibly "cure" me is an unimaginable concept.

To think that I could actually feel "good"...really feel good for once. Man, that would be priceless.

Here's hoping.

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captaincrab55 Collaborator
captaincrab55
Posted
It seems that for as long as I can remember I have said "My belly hurts" and "I'm so tired". Almost every day of my life. :( And ya know, it kind of sucks.

To think that just changing my diet could possibly "cure" me is an unimaginable concept.

To think that I could actually feel "good"...really feel good for once. Man, that would be priceless.

Here's hoping.

I'll second that!.. I just learned to live with all the dis-conforts, but it was the many years of the DH itch that finally got diagnosed 2 months ago.. Life is getting a little better each day..

runningcrazy Contributor
runningcrazy
Posted
It seems that for as long as I can remember I have said "My belly hurts" and "I'm so tired". Almost every day of my life. :( And ya know, it kind of sucks.

To think that just changing my diet could possibly "cure" me is an unimaginable concept.

To think that I could actually feel "good"...really feel good for once. Man, that would be priceless.

Here's hoping.

Have you just been diagnosed or are you giving it a go yourself? Either way good luck and I wish you good health and hope your stommach issues VANISH!

Were working on figuring out mine, after 2 negative blood tests and doctors who treated us like I'm stupid and making it up, I hope enterolab will give me some info, although i know it wont diagnose me I'd like to have some insight on genes, etc..

ravenwoodglass Mentor
ravenwoodglass
Posted

Sure do know. I hope the diet helps you. The diagnosis process can be a long and hard one for some of us. It sure was for me. LOL If the diet helps it can seem almost miraculous the difference in the way we feel. It is hard at first and there is a lot to learn but it is so worth it if gluten is causing the issues.

Tabasco Apprentice
Tabasco
Posted
  • Author

No diagnosis yet and I don't want to talk myself into having celiac disease or GS. I know how I am. A little bit of knowledge can be dangerous! It's just eery how I have so many of the "symtoms" that I am reading about.

My latest "thing" is completely forgetting to finish a word or a thought. I'll start a sentence and just stop. My husband will look at me like "well?" and I just can't remember the word.

I do have ADD that i am not treating because the meds cause headaches.

Ya know...now that I think about it...at my last visit with my rheumatologist, I was told that I had very low vitamin D deficiency (22 ng/ml) and I think she also told me that my B12 was low too.

I was given a prescription for 50,000 units of Vit D and she told me to buy OTC calcium and B12.

Putting all of the pieces together brings the big picture together, doesn't it?

I'll get there.

Hurry up 8/31!!!!!

ang1e0251 Contributor
ang1e0251
Posted

Good luck on your testing! I hope you'll give the gluten-free diet a test run even if your tests are negative. That's the only way you'll know.

The phrase I never want to say again is "I'm so tired of being tired."

SunnyJB Newbie
SunnyJB
Posted

Completely understand your frustration!!

Here's to finding a way to live without pain!

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ranger Enthusiast
ranger
Posted

Don't let the test results stop you from trying the diet. I had negative bloodwork ( had been gluten free for a month - duh, doc), and negative endo ( quick look - 1 biopsy), but went on the diet anyway. I knew my body. Am feeling better every day. Try the diet for a few months and see if thats what it is. Good luck.

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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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