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CDFAMILY

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Everything posted by CDFAMILY

  1. CDFAMILY
    LOL, well, I have low Platelets/ITP/Thrombocytopenia and Low white counts so my Drs. advised me not to take the vaccines. The first part of the covid Dec 28...was the typical flu with fever and headache that lasted less than 3 days. I think the rash started then. I thought wow this was easy but the next day the mucousy cough started that lasted about a...
  2. CDFAMILY
    Whoops, I have been gluten free for 17 years!
  3. CDFAMILY
    Hi Vobl, I am so glad you are feeling better!!! I was a pastaholic before being dx with Celiac in 2005. For years I was unhappy with the gluten-free pastas until recently when I found, "Jovial" which has many varieties including my favorite Angel Hair. I could not believe how good it was and how it tasted like the real pasta I used to eat. It is...
  4. CDFAMILY
    Also, I have not been vaccinated.
  5. CDFAMILY
    Hi, it has been years since I posted. I think I was posting back when it first started sometime around 2003 or so??? It was so helpful and a wonderful site to find help with all the questions we had early on! I probably had Celiac most of my life but was not Dx until 2005. I first was diagnosed with Celiac and then had a DH breakout a few months later...
  6. CDFAMILY
    Hi squirmingitch, it has been a long time since I posted here or even read here but today for some reason this was in my email and I read your post and thought you sounded a bit like me. Back in 1999-2003 my body started dying and getting just about every autoimmune syptom that one could possible have. Back then Celiac Disease was not on any doctors radar...
  7. CDFAMILY
    Hi Peacequeen, You sound a lot like me. I was dx with MG about a year before I was dx with Celiac Disease. I had many neurological problems that mimicked MG ALS MS and Parkinsons. I first started with Low white counts (Leucopenia) then ITP (Low Platelets). Then I was dxd with Fibromyalgia. These diagnoses stayed around for 14 years before things went...
  8. CDFAMILY
    Hi, what you are experiencing is mild neuropathy. My whole family would complain about this. You might check your B vitamins especially B12. Our family takes a B50 complex and B12 sublingual 2-5,000 mcg 3 to 4 times a week. We do not experience this problem anymore.
  9. CDFAMILY
    Interesting, and then if positive do they give you nutritional advice or drugs?
  10. CDFAMILY
    I have not had an SIBO test what do they do? Is it a breath test?
  11. CDFAMILY
    Oh this makes my blood boil! I am not sure but if he took biopsies for H Pylori then could he not go back and test those same biopsies for Celiac? I would demand he does because that is what YOU thought you were going in to be tested for. If he refuses maybe you should refuse to pay him. I am not sure this is great advice but it sure would be nice to...
  12. CDFAMILY
    Thanks for mentioning your tests as it is good to know what the Great doctors at Columbia are testing for. The Vitamin O25 is probabably your vitamin D3 test Vitamin 25(OH)D which is an important test that so many are deficient in and so easy to fix with a supplement. Let us know your tests results and how you are doing.
  13. CDFAMILY
    My husband and I must do a couple of trade shows a year so we have no choice but to eat out. We bring our own breakfast and lunch but dinner with employees and customers is a must. As careful as we are, there are times when we have been glutened and sometimes at the most upscale restaurants. After having a couple of difficult times, we found that taking...
  14. CDFAMILY
    Diane, Tarnalberry, Txplowgirl, My neuro also never heard that Celiac Disease could cause neurological symptoms and also can be related to strokes according to Dr. Green. I was at a Celiac conference a few years ago and asked this question already knowing that Dr. Green was researching this. The neuro speaking said he did not know of any connection. Luckily...
  15. CDFAMILY
    Diane, Hi, I have talked to many people who were dx with fibro first and later Celiac Disease. I was dx with fibromyalgia in 1995. In 2005 I was dx with Celiac Disease. All the severe symptoms of Fibromyalgia are gone. I do have a few tender spots but not nearly as tender. I do believe fibromyalgia is related to the gut. I also had a neighbor who was...
  16. CDFAMILY
    Hi Elizabeth, My daughter Elizabeth also has Celiac and attends UA. Please ask to talk to the head of the Campus Food Service. Discuss with them your needs. Tell them to call Akron U if they have any questions as I am sure they would be glad to help. We did this at UA 3 years ago and you would not believe how wonderful they have been. She just has...
  17. CDFAMILY
    Thanks Peter, I was hoping someone would explain the IgA deficiency a little better.
  18. CDFAMILY
    Dear Veggiemomma, Wow, I am sorry to say this doctor is not very informed about Celiac Disease. He sounds like an old school doctor who keeps rereading his outdated text books. IgA does not rule in or rule out Celiac Disease. It is only helpful if you are IgA deficient, then, if he knew what he was talking about, he would then know you need to have...
  19. CDFAMILY
    Hi Jennifer, What a great sister you are! High Blood Pressure
  20. CDFAMILY
    I agree with Gemini about the inflammation already being present and that a smart doctor would already have diagnosed this as Celiac Disease especially after reading what Dr. Guandalini says that the vast majority of type 1 diabetes DO NOT HAVE severe changes to their intestines. Open Original Shared Link And yes emergency trips to the bathroom...
  21. CDFAMILY
    1. How old is your son? 2. Does he have any symptoms you would not think are Celiac, like low endurance, fatigues easily, problems concentrating, behavior problems, easily irritated, whiney, quick to get a stitch in his side while running, easy to get sick with infections, headaches, complains of aches or knee pain, sinus problems, any numbness like fingers...
  22. CDFAMILY
    Ok mcphena I have never told anyone this but I too had the same strange and scary looking stools like flat ribbons. I do think strange things like this is very common with Celiac. Also the constipation is a main symptom so I would not worry to much about that being cancer. But if you feel more comfortable getting both then I would go ahead. I did...
  23. CDFAMILY
    mcphena, I am really concerned about your Gastroenterologist. He sounds very uninformed. Most Celiac Doctors do not look in the large intestines (colonoscopy) for Celiac unless there is a reason. 99% only do an EGD (upper endoscopy with 6-8 biopsies) when blood tests are positive like yours are. I think your doctor may be mixing up the ranges of TTG...
  24. CDFAMILY
    Also, remember that if they are doing a regular Allergy test, a wheat and milk test could be negative like they were for me andy my daughter. This is because Celiac Disease is an intollerance to wheat not an allergy. There are intollerance tests but most allergists refuse to do them. I tried going that route to see what other foods are a problem but our...
  25. CDFAMILY
    Hi Robyn, I was wondering if they checked your sons ferritin levels. My youngest did not have positive Celiac numbers but did have the DQ2 and low ferritin. She also had been almost gluten free. When we did a challange her whole iron panel fell dangerously low. She followed exactly what happened in this article that was posted in PubMed in 1982. She...
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