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JD-FLA

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by JD-FLA

  1. JD-FLA
    I made the mistake of telling co-workers about my food allergies (and celiac) and regret doing so. I have become the source of many a joke and what I feel are inappropriate questions and comments. I have been offered a donut only for the person making the offer to say "Oh, wait, you can't eat donuts. What do you eat?". I recall someone saying "Hey, do you...
  2. JD-FLA
    Although diagnosed with celiac and dermatitis herpetiformis, I was curious about the celiac genetics and had that testing done on my own. Unfortunately, the lab does not explain the results and any doctor I have asked said I would need to see someone specializing in genetics. I was hoping someone out there might help me understand. Here is what came back...
  3. JD-FLA
    Understanding that normal is <15, I started off with 250+, then using the same lab it took two years to get to 11, the last test was 3. So, it jumped back up for some reason which is why I suspected gluten in my diet somewhere. I do not do dairy, eggs, oats, or soy. I am vegan and gluten free, and take numerous supplements with the help of this forum.
  4. JD-FLA
    I am surprised that your doctor would not diagnose based on sight? I was diagnosed with dermatitis herpetiformis but the biopsy came back negative. The dermatologist said that can happen as the disease was not active at the time, but it was classic dermatitis herpetiformis in his opinion especially since I was already diagnosed with celiac several years prior...
  5. JD-FLA
    I have celiac and I have been gluten free for several years. Very careful and as far as I know I have never consumed gluten. Recently my bowel movements changed dramatically and I have been Bristol 6 for two months and just now moving to Bristol 5. My GI ran all sorts of blood tests and all were good. The celiac panel test for tTG IgA came back at 13.6 (normal...
  6. JD-FLA
    Hello IrishCoeliacDad - I live in Central Florida and I have been successful in finding foods that are gluten free. Publix is another supermarket chain in the area. If staying on Universal property you'll need to do a rideshare like Lyft or Uber in order to get to Publix. I recommend the Publix on Sand Lake Road at Plaza Venezia. Whole Foods is right in that...
  7. JD-FLA
    Megrosewalker - We have all been there. The shock of the diagnosis and then the ongoing challenge of what to eat and what not to eat. Upon diagnosis I tossed out all of my bakeware, toaster, and anything that I thought would expose me to a crumb of gluten. I recall being in the grocery store, going aisle by aisle and finding nothing to eat. Even today, after...
  8. JD-FLA
    I am not sure if my challenges were entirely due to deficiencies but as my celiac symptoms got worse I found that I had pain in my joints. It seemed to travel from one joint to another. I had X-rays done of two of the more painful areas and I was told it was osteoarthrosis. They noted spurring in the knee and the plantar fascia. Bone density though is listed...
  9. JD-FLA
    I have watched (very slowly) the Tissue Transglutaminase IgA levels go down over two and half years and late last year I was finally at a normal level. Then two months ago I started getting a painful and itchy rash on my elbows. Dermatologist just diagnosed it as dermatitis herpetiformis. Is it possible to get brand new symptoms even though I am fairly confident...
  10. JD-FLA
    It is interesting that no one in my family that I am aware of has celiac. With that said on one side of the family there is a long history of various (and severe) autoimmune diseases. My sister was severely disabled from RA and died at a young age as a result. My uncle died at a young age from Addisons and on and on. There were so many. I would imagine there...
  11. JD-FLA
    I had my genetic testing done as well although the results were not quite as detailed as yours are. I did post them on this site but did not get any response. I have to assume that most do not have this testing done. Like you I was lost at what the results meant so I reached out to the online lab I used to get them done and the reply is that they are not...
  12. JD-FLA
    I have been getting them more frequently. I pulled this from another post - "With all this said, my husband is actually at the doctor getting tested for celiac disease again this morning. Jeff was diagnosed last year with Sarcoidosis, which has done quite a transformation to his body. Sarcoidosis and celiac disease can be associated with one another." .....
  13. JD-FLA
    Every month is a new symptom for me. The last couple of months have been excruciating muscle spasms when I stretch my legs. You know how you just want to raise your arms up in the air and then stretch your entire body. It should feel awesome but if I am not careful and I stretch my legs, I will get these unbearable spasms in my calves, thighs or feet that...
  14. JD-FLA
    Yes, Trents, I do regularly take a whole list of vitamins and supplements. One member suggested a certain form of Thiamine HCI along with magnesium glycerinate and I take that along with a b-complex that a ENT doctor suggested I take (I have pulsatile tinnitus - he felt that might help). I am honestly not happy I have to pea protein but meat truly makes me...
  15. JD-FLA
    Well, yes, Tracy414, I am confirmed but based only on bloodwork. No biopsy. As one member has said at this point I have accepted the fact that I have celiac, but I thought doing the genetic testing would give me a guarantee of some sort. I have tried Google to research the test results and I am afraid I would need a much higher college degree to understand...
  16. JD-FLA
    In addition to a gluten free diet I am allergic to dairy, soy, eggs, fish, oats and shellfish. That does not leave many options. I typically just look for gluten free vegan options but must watch they do not sneak in soy. In the US is a brand known as Naked and I go with Naked Pea as my go to for a protein supplement. There are not many protein options for...
  17. JD-FLA
    I was wondering if anyone can explain the Celiac genetic testing I had done recently. I did one of the online tests and they really didn't explain the results. I never had the biopsy done but blood test showed positive results with 20 times the normal limit for the tTg IgA and Endomysial IgA showing a positive result and abnormal. HLA DQ2 = Postive ...
  18. JD-FLA
    Sorry K-Cope - I went off topic and I wanted to share my go to for a bread option. I have many other allergies besides gluten but found the brand Ener-G bread to be a good option. Until recently I was able to eat the Multigrain Loaf. The weird thing is this bread is vacuum packed and does not need to be frozen. One negative, I have seen online folks that...
  19. JD-FLA
    I have to agree with looking at your diet. I am now on a low FODMAP diet and magically I am not having the horrible symptoms I was having. I believe I developed SIBO although have yet to be tested for it. Of course the cure creates other issues. I agree with the other post - Target acetaminophen, Phazyme, and I found something called Enzymedica Acid Soothe...
  20. JD-FLA
    Yes, that is my new GO TO...online testing. I use "Request a Test" and so far they seem to be legit. I just had the genetic testing done as I just wanted further confirmation. My doctor would not order the copper test that I've been reading about so I might get that done. Thanks for advice and indeed...healthcare is frustrating.
  21. JD-FLA
    Trents - You are right it does not matter but when the government and insurance companies are involved it does matter. I am sick all the time and my PCP did diagnose me with Celiac even without the biopsy. That allowed me to file for FMLA. Also, with a diagnosis of Celiac, I can use my HSA to pay for items that ordinarily might not be covered under HSA. I...
  22. JD-FLA
    Because of the insurance I have when I see a specialist (which takes about two months for a new patient), I have to. pay out-of-pocket, which is hundreds of dollars. I don't want to go to another GI for them to say, "Patient states came here at direction primary care provider since "GI is supposed to be the expert" but is largely self directing his therapy...
  23. JD-FLA
    Sorry...reading back I meant to say "I told him I would NOT do that as I was so sick before going off gluten completely.
  24. JD-FLA
    Does anyone know of an online reputable health clinic that will help me manage my celiac, IBS and what I now believe to be SIBO. I cannot get my local doctors or a GI to assist as I did not have the biopsy done for diagnosis. I saw a few online options but I am concerned that they are just looking to sell you their miracle cures and formulas. I continue to...
  25. JD-FLA
    Hi K-Cope - Contrary to my forum name (which I have not yet figured out how to change) I am about two years into this now and let me just say I have hated every minute of it. In response to your biopsy question...I was so very sick and down to about 140lbs (I am a six foot male) when my PCP told me I had Celiac after doing the blood tests, he suggested I...
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