Irishgirl76

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Everything posted by Irishgirl76

  1. Hello, I was diagnosed with Celiac just over a year ago. I have adopted a strict gluten-free (and grain-free) diet. I eat very clean, no processed foods, no soy, no dairy etc. yet I am still not feeling better. Very fatigued all the time. I am starting to suspect my thyroid. They checked my TSH when I was diagnosed and it was fine, but in my research I see that TSH is a poor test for Hashimoto's, and what they should be looking for is antibodies. My question is this: since Hashimoto's has a clear link to gluten sensitivity/Celiac, if I get tested for it now, will it come up negative since I have been gluten-free for a year? This week I took my cousin for Celiac testing, as she has many symptoms of Celiac. Come to find out she was diagnosed with Hashimoto's and Graves Disease as a child. So there is a family history. I have booked a doctor's appointment but would like to know what the odds are of a false negative. Thanks so much! Alissa
  2. Thanks. To confuse matters, I also asked to be tested for pernicious anemia (symptoms are similar to hypo thyroid), but she only put B12 and CBC to check for that... Although from what I understand you have to look for antibodies (PA is another autoimmune condition). We'll see what comes back. The bloodwork I had done a year ago showed my B12 at 167 (normal range 198-615), and she failed to even mention it. That could also explain my crazy fatigue, heart palpitations, etc. I just want answers so I can start feeling well! I'm sure you all can relate. I'm a single mom to 3 small children and I don't feel like I am giving them my best because I am so darned tired and foggy.
  3. So I had my bloodwork done today. Not sure how long it takes to get results back but I would like to be prepared when they do come back. What if she tells me I do indeed have antibodies but my TSH is "normal" so I don't require treatment? Also, I requested Free t3 and free t4 but what she wrote down was t3 and t4. Is this the same thing? I also asked for TSI (for Graves) but she didn't put that. I do suspect my symptoms are hypo rather than hyper but I seem to have symptoms of both. Any thoughts welcome! Thanks.
  4. I realize this is an old thread, but this is EXACTLY what my arms look like! If I knew how to upload pics, I would. The funny thing is, my rash never appeared until AFTER I was dx'd with Celiac and had been gluten-free for many months! It is just now starting to calm down after 4 months of flare-up.
  5. Thank you Gemini. I have read lots of anecdotal stories about people going gluten-free and their thyroid antibodies plummeting. I just want to be sure that if the tests come back negative that it means I do not have Hashimoto's. Not that I have just stopped producing antibodies because going gluten-free has calmed my immune system. Some people are saying this can happen in as little as 3-6 months of being gluten free. The more I read, the more I realize I have many symptoms of both hypo and hyper (or Graves??) - including Mitral Valve Prolapse, which I was diagnosed with last year. I've read some studies that say as many as 40-50% of those with autoimmune thyroid disease have this! I have written down all of my symptoms and rush factors, along with what tests I should ask for, to show my GP. Any advice or suggestions would be welcome. Thanks, Alissa
  6. Interesting... Would you mind posting your results here when you get them?
  7. This video is long but it explains how gluten affects autoimmunity (including thyroid).
  8. Hello, Just for a bit of history - I was diagnosed with Celiac in March of this year, and my 7 year old daughter was diagnosed in February. I had both of my boys tested as well, and they tested negative. Recently, my kids went to visit their dad for 2 weeks. When they came back, my 5 year old son had a horrible rash on both of his elbows. It was itchy, and he said it hurt. I took him to the doctor, who seemed skeptical that it could be DH, but after my insistence, said to come back in a week and she would biopsy it. However, it seems to be disappearing. Is it possible that this could be DH? I read it was rare in children. Since my daughter and I both have Celiac, I decided to make us all gluten-free. They have not knowingly had any gluten since my daughter's diagnosis in February. I asked my doctor if I should give him some gluten if the rash starts to go away, to see if it flares it. She said no. I picked up some crackers today and am debating whether to give them to him. His Celiac test was negative so it's not like I am knowingly giving gluten to a Celiac... and at the same time, if this is DH I feel that it is my only opportunity for a diagnosis, since likely there was some cross-contamination from his dad's house. His biopsy is Wednesday... if I give him some gluten over the next few days and it flares his rash, will that make it more likely that it is DH? Is that enough exposure to get a positive biopsy result? Should I trust that my GP knows how to biopsy for DH properly? Also, when I took my son in for his appointment, I also booked an appointment for myself for what I thought was "hives". I get this intensely itchy rash on the backs of my hands, that sometimes also appears on my arms, the backs of my knees, and on my back. They are little tiny bumps that look like pimples when they are inflamed, and are so itchy I want to scratch my hands off. I assumed they were some kind of allergic reaction, as I wasn't really knowledgeable about DH, but now I'm wondering if that's what I could have as well? I didn't think the backs of the hands were a common site for DH. I have some scarring when they are not active. When they flare they are like tiny white blisters, and get redder as I scratch at them. I asked to be referred for allergy testing but now wondering if I should biopsy for DH as well. Does it matter if I already have a firm Celiac diagnosis and am gluten-free anyway? If I am gluten-free, could I still be having DH flare-ups? Thanks for any help! Alissa
  9. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    Thanks, squirmingitch. He has had minor flare-ups, but nothing major. I, on the other hand, had a major outbreak that lasted about 3 months (and is just settling down now). It was by far the worst I've ever had. At least I assume that was what it was. Whatever it was it was horrible, and the itching would actually wake me up in the night.
  10. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    Just to update, we finally had the genetic testing done, and all of the children turned up HLA DQ2 positive.
  11. Thank you. I have gotten very good at stomping my foot. I was the one who demanded Celiac testing and my daughter and I both came back positive. I have been right on a few other self-diagnoses as well (ie - my daughter's asperger's), so I think my doc has learned to listen to my instincts. Thank goodness!!
  12. Oh and I ALWAYS ask for test results, especially since my sister had her whole family tested for Celiac after I was dx'd and she was told her results were "fine". One year later her daughter had a SEVERE DH breakout, went back to the doc. He pulled up their bloodwork result and oops, 2 do the kids were actually positive.
  13. Thank you both very much. That will be very helpful. My TSH results were 1.6.
  14. Are these the correct tests I should ask for? TPOAb - Thyroid Peroxidase Antibodies TgAb - Thyroglobulin Antibodies Free-T3 Free-T4 Should I ask for Graves testing as well? Thanks!! Alissa
  15. Thank you!!! I have been searching the Internet for 2 days. Lol
  16. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    I thought the Total igA was separate from the gluten testing? Just to make sure your body is producing sufficient IgA?
  17. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    That sounds awesome! I wonder how long until it's widely available... OH, one more question... Although the boys have already had the Celiac Panel, they didn't run a total IgA. Is it worth it to have this done while I'm having the gene test done (to save poking them more than once)? Do you think it's relevant? They also ran the IgG version of the Celiac test and it was negative as well.
  18. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    Would it make more sense to wait and see what the gene test says? Positive gene test + itchy rash might be a more compelling reason to take them on rather than just the rash.
  19. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    Thanks. We are in a smallish city. We do have a pediatric gastroenterologist for my daughter, but since my sons' tests turned up negative we didn't get referrals for them. She was the one who wrote us the req for the gene tests though, so maybe she would see the boys. Luckily, I homeschool my kids, so school is a non-issue at this point. However, I'm a single mom so there is a chance that at some point in the future I will have to return to work and put my kids in school. If that was to happen, I would want to be armed with a dx. I like to be prepared for all possibilities. I welcome any other thoughts/ideas! Alissa
  20. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    Thanks for the info. I'm going to call and cancel the biopsy, which was scheduled for Wednesday, until I have more time to figure this stuff out. It seems pointless to biopsy him if he has been gluten-free for 4 months. Poor guy was itching like crazy at bedtime, and asked if he would feel better in the morning. It's so hard when I just want to get to the bottom of it. His dad thinks we should just stick to the gluten-free diet and not bother with any further testing. I think at the very least I should pursue the gene test. I know they also didn't run a total IgA for any of us, so it is possible that he is IgA deficient.
  21. Irishgirl76

    5 Year Old Boy, And Possibly Me?

    I do have requisitions for both boys to have gene testing done - would this be my best bet vs biopsy? I should note that when we all had our bloodwork done, we had been *mostly* gluten-free for several months beforehand (not including contamination/hidden sources of gluten). I re-introduced gluten for a couple weeks before the blood tests. This yielded an extremely high positive for my daughter (off the chart), a slight positive for me, and negative for the boys (who are 3 and 5). So there was a good chance of false negatives with their bloodwork.
  22. I had my gastroscopy 2 1/2 weeks ago and am STILL waiting on results! I had a slightly positive TtG, and the lab report said that it was "essentially diagnostic of Celiac Disease", but of course I have to have a biopsy to confirm diagnosis. My daughter is unquestionably Celiac (her bloodwork results were off the chart, and she had marked villous blunting). So I'm pretty sure I have it as well, and have been gluten-free since my biopsy, but it's still driving me nuts that I don't have confirmation. When people ask me why I'm not eating gluten, it's kind of a pain to say "I think I have Celiac, but I'm not sure yet!". And my boyfriend keeps joking that the doctor will tell me that I am fine and can go back to eating gluten at any time (he is kidding, of course!). I took my sister to the hospital on Monday for a colonoscopy and gastroscopy, by the same doc who did mine. She actually went in for a colonoscopy due to multiple gastrointestinal issues, and as soon as she mentioned me, and that I probably had Celiac, he opted to do a gastroscopy as well. I'm now kicking myself that I didn't just ask him for my results when I was there, but I figured I was there to support my sister, not for me... I have called his office 3 times in the past week (although it specifically states in their message not to call multiple times); the first two times they didn't have results yet, and yesterday they said that they didn't have my results in the office, but that the doctor had them at the hospital. She said that if it was anything significant, he would have called me. (So, does that mean the result was negative, since I didn't hear from him?) I've called my family doctor, and the receptionist said that the results were in, but that she couldn't interpret them, and she would have to wait for the doctor (who wasn't in yesterday). Aargh. Anyway, I'm venting here to keep myself from calling again and making a nuisance of myself! I can cope with it either way (positive or negative), but the not knowing is seriously making me nuts.
  23. Irishgirl76

    Portable Bbq?

    So we were out of town the other day, and stopped in to visit some friends. It was just a quick visit, I had something to drop off, so we didn't stay long. (It was lunch time, and I was trying to make sure they didn't try to feed us!). They did offer the kids an apple, which I thought was fine, until I noticed he was cutting the apple with the knife and handing out pieces of apple to all the kids (his and mine). I guessed that was probably ok, as long as the knife was clean. (He was just cutting it with his hand, not on a cutting board or anything). Today he sent me an email, thanking us for stopping in, and said that next time we were in town he wanted to have us over for a bbq. Ugh. I know it was just a matter of time before stuff like this started, and I will need some coping strategies. I don't want to always turn down invitations. So then I got thinking... do any of you use one of those portable/camping barbecues? I thought it might be easier to take my own little bbq with us when we go places, and then I wouldn't need to obsess over whether our food was getting contaminated. If we brought our own food, portable bbq, and utensils, do you think it would be do-able?
  24. Irishgirl76

    Portable Bbq?

    Awesome! Thanks!