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Ginger38

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Everything posted by Ginger38

  1. Ginger38
    Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress ...
  2. Ginger38
    It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
  3. Ginger38
    I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
  4. Ginger38
    I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry. But Developing s...
  5. Ginger38
    So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few. I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If t...
  6. Ginger38
    I also had high eosinophils which I’ve never had before either - could that be due to gluten consumption?
  7. Ginger38
    So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done...
  8. Ginger38
    Thank you ! Good to know I am not alone. I am currently on metformin and rybelsus for my diabetes. The last week or so my sugar has been so uncontrolled, more so than before. I am very frustrated and discouraged by all this. I have had days of 317 to a low of 64. I feel terrible. I am getting back on the gluten free wagon, just taking some time, and not seeing...
  9. Ginger38
    Thanks. I appreciate it
  10. Ginger38
    Yikes! I did not know that
  11. Ginger38
    Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes...
  12. Ginger38
    I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible. I have positive TTG IGA antibodies - and I have...
  13. Ginger38
    No, I have not been checked for any other deficiencies or issues. No one will check these things since my EGD looked normal and there was no damage. I recently saw my gastro doc and it is just frustrating. I have diabetes, which is basically uncontrolled, and I keep being told, stop eating gluten free, because the gluten free diet is contributing to my diabetes...
  14. Ginger38
    I have extreme sleepiness when I am eating gluten, especially regularly , like for the gluten challenge
  15. Ginger38
    Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise. I have started having palpitations and chest pain, both of which seem to be...
  16. Ginger38
    Yes the journey here has been a long one. Is there any reason to continue to check blood antibody levels in the future? mine had not gotten to negative or zero yet . Thanks for all the great information! I will check out these supplements and hopefully start feeling better !!
  17. Ginger38
    Thank you! This is helpful and validating, which is nice. I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that. I haven’t g...
  18. Ginger38
    Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on ...
  19. Ginger38
    Thank you 😊 Yes this whole process has been very frustrating! I didn’t think NCGS caused positive TTG-IGA antibodies? I thought NCGS was just a sensitivity but doesn’t cause ab autoimmune reaction which is what raises the antibody levels, correct? A formal diagnosis would have been so much easier for me as far as dealing with family and functions and fo...
  20. Ginger38
    I forgot to add that my gastro doc was 💯 sure I had celiac and finally convinced me to do the gluten challenge which was TERRIBLE… I gained like 9 pounds and was so bloated and swollen and in pain.. all because he felt I needed this diagnosis.. which in the end I didn’t get .. It’s been frustrating. And I don’t understand why my body is throwing out antibo...
  21. Ginger38
    I have positive Ttg-IGA antibodies- and I have every time they have been checked. Also the antibodies do respond positively to a gluten free diet. However my biopsy showed no damage and my doc said it all looked okay in there. How does this happen and What does this mean??
  22. Ginger38
    I had positive TTG - IGA antibodies. Is the marsh scale something that is automatically done when they do the biopsies or how does that work? And how many biopsies should the doc have done for pretty accurate results?
  23. Ginger38
    Thank you so much and thanks for all this good information! I’m glad I survived as well. It was rough! I already feel lighter or something and the bloating is so much better as well as the leg and feet swelling.
  24. Ginger38
    Thanks for the info, that helps me understand all this a little better. My GI doctor has already told me that regardless of the biopsy results he believes I have celiac and either way I have to live a dedicated gluten free life as a celiac
  25. Ginger38
    So what happens if a person doesn’t have any damage yet? The biopsy would come back negative, correct? But does that mean you don’t have celiac or it was just caught before any major damage has been done? Im A bit confused
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