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Proud Of Myself!

bartfull

By bartfull
in Coping with Celiac Disease

Recommended Posts

bartfull Rising Star
bartfull
Posted

Well, I am self-diagnosed. There are two reasons for that. 1) I don't have insurance, and 2) I have, not an IRrational fear of doctors, but what I think is a RATIONAL fear. It was medical error that killed my father. It was medical incompetence that killed my beloved Grandmother. And I'm pretty sure Mom's "leukemia" was actually a vitamin B-12 deficiency brought on by her Celiac.

But, I finally went to a doctor! I have this jaw pain that flares from time to time. This has been going on for years now (about 5), and I DID go to several dentists and MD's when it first started. Not one of them could tell me what it is. They all said I need an MRI. Once again, no insurance.

But with all of these food intolerances (gluten, corn, salicylates, and possibly nickel) there is not one over the counter pain med I can take. So I asked this doctor to write me a prescription to have some "clean" Tylenol made.

I was pretty impressed with this guy. He took time to talk with me, even though I didn't have an appointment. (Walk-in clinic) He gave me a couple of things to try in the meantime, to ease the pain. (Alternating hot and cold compresses, epsom salt poultice, that kind of thing.) Then he told me to call him the next day to see how I was feeling. AND, the regular clinic he works at has a nutritionist on staff. He has set up a telephone consultation with her for me on Monday. I'm not getting anywhere near the nutrition I need right now and have not been able to find vitamins that don't have at least one of my "poisons" in them. He thinks this lady might be able to help.

I have another appointment with him on the 6th of January, and I'm going. This walk-in clinic is a once every two week deal that they hold at a local church. It is free. This doctor knows I'm about broke so I think that's why he set this nutritionist talk up over the phone - no office visit fee.

But even though his regular office is about 40 miles away, I will now know who to call if I ever really NEED a doctor. And I won't be afraid. I hesitate to speak too soon, but I think I trust this guy!

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mamaw Community Regular
mamaw
Posted

Glad you found somebody you trust...and the price is right!!!!!!

I asborb liquid vitamins way better than pills... I wish you luck with the nutrition consult, I never found or had much luck with them or a dietican when it comes to celiac....

love2travel Mentor
love2travel
Posted

Excellent news! It is encouraging to hear about your new doctor. My dietitian is absolutely amazing - jam packed with correct and current information. All the best! :)

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  • Posts

    • 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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