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JD-New to Celiac

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Everything posted by JD-New to Celiac

  1. JD-New to Celiac
    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...
  2. JD-New to Celiac
    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...
  3. JD-New to Celiac
    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...
  4. JD-New to Celiac
    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...
  5. JD-New to Celiac
    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...
  6. JD-New to Celiac
    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...
  7. JD-New to Celiac
    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." .....
  8. JD-New to Celiac
    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...
  9. JD-New to Celiac
    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...
  10. JD-New to Celiac
    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...
  11. JD-New to Celiac
    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...
  12. JD-New to Celiac
    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 ...
  13. JD-New to Celiac
    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...
  14. JD-New to Celiac
    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...
  15. JD-New to Celiac
    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.
  16. JD-New to Celiac
    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...
  17. JD-New to Celiac
    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...
  18. JD-New to Celiac
    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.
  19. JD-New to Celiac
    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...
  20. JD-New to Celiac
    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...
  21. JD-New to Celiac
    I can only give you my account of why this would make sense and I hope that helps to explain why this is important news. I was misdiagnosed for years and gradually became so ill to a point where I was rapidly losing weight and at a point where I could no longer eat. I am a medium framed 6ft male and was nearing 140 lbs by the time a doctor did testing for...
  22. JD-New to Celiac
    RMJ - thank you for the post. I do not fall into the known cases of the clotting issue with J&J. I am a 58 year old male but in the past I have had bleeding issues after minor surgery and had trouble clotting. Ironically I opted for the J&J as I heard about the possible Pfizer vaccine death of the doctor in south Florida. Initially it was thought...
  23. JD-New to Celiac
    So sorry to hear that you both went though COVID and its lingering symptoms. I have not been tested for COVID as I never really had any symptoms but it is interesting to hear of your friend. I thought the vaccine had actually triggered some older medical issues as I had asthma ten years ago but it went away. I will see a PCP if it continues but like you I...
  24. JD-New to Celiac
    Welcome Alfrieda. I am fairly new to all of this being diagnosed last August and I will tell you it was an absolute nightmare the first month or two as I adjusted to this new lifestyle. It was surprising to me that even small amounts of gluten can continue to cause problems so I tossed out my toaster and several other items that might cause problems...
  25. JD-New to Celiac
    Hi Melissa93 - As you might know they temporarily pulled the J&J so of course that is concerning. The pain on my left side and arm are gone but I continue to have this shortness of breath, the headaches and now sharp jabbing pains in my leg joints. To be honest all of these are very minor and take turns flaring up. I will wake up with no breathing issues...
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