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researchmomma

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Latest Celiac Disease News & Research:

Everything posted by researchmomma

  1. researchmomma
    My sons biopsy came back normal. I don't have any other info but I will meet with the doctor next week to discuss other reasons for osteoporosis.
  2. researchmomma
    I just found this and it oddly gave me hope that he may have celiac disease: Low Bone Mass and celiac disease Individuals with bone mineral density more than 2.5 standard deviations below the sexspecific peak bone mass are presumed to have osteoporosis. Low bone mass is common in subjects with newly diagnosed celiac disease. The mechanism for this effect...
  3. researchmomma
    Cyclinglady, I have to agree with you completely. Well the endo is now fully engaged since my sons dexa scan showed osteoporosis. It just seems that if he got osteo-p from Celiac he would have low calcium and vit D levels. He has low vit D levels but normal calcium so that has confounded things with other physicians. Anyway, still waiting for the...
  4. researchmomma
    Just an update, all his tests for osteogenesis were negative but because he didn't have significantly low VitD and his is tall (albeit very thin), the endocrinologist didn't tihnk he could have Celiac. My son's blood work was indeed negative but he also is on a 70% gluten-free diet because he sister is intolerant. There are days when he is gluten-free...
  5. researchmomma
    I was here a few years back when I was trying to get testing for my daughter and you all were very helpful. Especially Irish Heart and a few others and I am still very grateful for their help. The GI did a gene test to rule out Celiac because of her GI issues with a negative Celiac blood panel. She does not carry the DQ2 or DQ8 genes. She was diagnosed...
  6. researchmomma
    Thank you for replying. The mono was negative but her Free T4 is low. More testing. Thanks again. I don't think that swollen spleen is from gluten. I think it has something to do with whatever she is fighting. I hope.
  7. researchmomma
    Hi, my daughter's reactions to being glutened seem to be getting more severe. We are very strict and cautious but we travelled recently and I left her for one hour with my relatives and she got glutened. She is 13 years old and when she is exposed now, she gets horrible stabbing pain in her side near her appendix which is her mesenteric lymph nodes as evidenced...
  8. researchmomma
    Yeah! That is great. There are lots of recipes for gluten-free brown bread! Google it. My fav is from www.glutenfreeonashoestring.com
  9. researchmomma
    Welcome to the Board and you are right, this is the place to vent. Someone posted about the emotions that one goes through with a Celiac Diagnosis. It was well stated but I can't find it. Maybe someone else can. You will find that you will try different products that others rave about and you may not like it. For example, we like Synder's gluten-free...
  10. researchmomma
    My neighbor's son was diagnosed at 18 months. Because he was so young, he doesn't "miss" things like the process foods that my 12 year old daughter miss. So that is one positive. I know your heart breaks for her but it will be OK. There is an adjustment period for this and we are watching a friend go through it right now. You will slowly figure out ways...
  11. researchmomma
    Ahhhh thanks
  12. researchmomma
    I went completely gluten-free when my daughter had to. I have endometriosis and noticed that I no longer have pain from that. I find that quite interesting. I also have more regular bowel function (I have always had a problem with constipation) and I also seem to have more energy. I am also a complete nutter and I am now baking like crazy so I started...
  13. researchmomma
    There are two big reasons that I would want that biopsy for a child with his history: 1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac...
  14. researchmomma
    I made this Cinnabon Clone and it rocked. My Celiac neighbors couldn't believe it was gluten-free. My gluten-free daughter was in heaven. I had one and wasn't hungry until dinner! Open Original Shared Link
  15. researchmomma
    Last night we made terriyaki grilled chicken with swiss, arugala, spicy humus and red onion. Served it with corn on the cob for the family (I am not a fan) and sweet potato french fries. I was pretty impressed with the Udi's buns.
  16. researchmomma
    I wish I had thought to do that!
  17. researchmomma
    I could have written your post except our issue was constipation. My daughter was negative on blood and does not have the genes so they wouldn't biopsy. We decided to take her off gluten for 3 months and see if helped. Well guess what? It did and it has been fabulous. Now her doctor has diagnosed her as Non Celiac Gluten Intolerant. I went in with...
  18. researchmomma
    I think Friday is fine unless you start feeling very poorly and then maybe go to urgent care. Keep eating gluten and ask for the Total Celiac Panel. Keep us posted.
  19. researchmomma
    I am so glad you enjoyed Prague. I just returned from living there for two years. I laughed when I read "no smiles, that wouldn't be Czech". Boy are you right about that. We weren't gluten free in Prague, although I wish my daughter had been diagnosed there since they are very familiar with Celiac disease and gluten intolerance. It would have been so...
  20. researchmomma
    You also mentioned that your Mom tested positive. Is she diagnosed with Celiac? My daughter went back to eating gluten for two weeks and she couldn't take it (neither could we because her moods were horrible). I wish you good luck and keep us posted.
  21. researchmomma
    I just wanted to jump in here and tell you my quick story. I say avoid the genetic testing until you can get a biopsy. If your child doesn't have the genes, they won't want to do the biopsy. My daughter has all the symptoms of Celiac including steatorrhea and failure to thrive but our Celiac Specialist would not do a biopsy because her blood work was...
  22. researchmomma
    My daughter gets seizures (occipital based with an aura) from gluten. She stumped her neurologist for years because her EEGs are normal between seizures (they only occurred 1-2X per year). But she also had terrible balance, dizziness, and brain fog. Then there were her other symptoms like her mood, stomach issues, constipation, failure to thrive, etc....
  23. researchmomma
    It took 9 weeks of gluten-free for it to improve in my daughter. Lots of water, probiotics and lots of veggies.
  24. researchmomma
    My pediatric GI discounted the enterolab testing. Getting a diagnosis can be helpful in little ones. It can also help them stay on the diet later when you aren't there to "police" them as teenagers.
  25. researchmomma
    I have had five miscarriages due to endometriosis and the pain was all consuming. Loves2travel has it right in my opinion....well meaning people say the dumbest things. Just ignore them and heal. I finally conceived my son and I will tell you that I can't imagine having a different child. I know that is just talk to make myself feel better but...
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