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Mom-of-Two

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Everything posted by Mom-of-Two

  1. Mom-of-Two
    Can someone explain EMA testing to me? My daughter had elevated tTG back in April (tested b/c I have it), had a normal biopsy in May. Doc said stay on gluten, no damage, no celiac. Didn't like that advice, got a second opinion and he basically said the same but was way more willing to search for a diagnosis. Re-ran tTG (had been 3 mos since initial tTG),...
  2. Mom-of-Two
    ^^^ Just beware if the second opinion tells you the same! I felt the same way after our pediatric GI told us she doesn't have celiac, "if" she does it is latent celiac and you don't need to change her diet, just need to re-test every 6 months and watch for symptoms. I was unhappy with that advice, obviously, so off we went to the Cleveland Clinic, where my...
  3. Mom-of-Two
    I am more new to this, 6 months gluten free, but wanted to say I understand how you feel! It was hard before I discovered my kid also has to be gluten free, now I am anxious about it all the time. Worrying about yourself is one thing, but constantly thinking about my daughter getting sick from gluten at school, a party, sleepover, etc is enough to make me...
  4. Mom-of-Two
    My 8 year old had positive celiac blood work (tTG and EMA), but a normal biopsy. Two GI docs wouldn't diagnose with celiac despite the fact that I myself have celiac. We followed up 3 months after her intitial tTG test (which was 78.20, normal <20), and her tTG level was then 44 - BUT, she had been gluten free at home for 2-3 weeks time by then. She also...
  5. Mom-of-Two
    Two biopsies is not enough!! It is baffling that a GI would only take two biopsies when looking for celiac! I would NOT consider this biopsy to be valuable in your diagnosis. I was diagnosed with biopsy that she had taken 6+ samples, when my 8 year old had her scope done, they took a total of 8 samples. Did you say you had celiac blood work? If...
  6. Mom-of-Two
    We use and love Animal Parade GOLD- we buy it on Vitacost.com and the kids love them. They are a whole food vitamin with no fake colors or sugars, are sweetened with xylitol which is good for the teeth. They have D3, whole veggies and probiotics, we noticed a huge difference when the kids began taking them, prior to cold/flu season. They have an assorted...
  7. Mom-of-Two
    Made a sample batch today, with butter as it called for, and added maybe 1/2 C good quality chocolate chips to the mix, they came out fabulous! Made some chocolate cream cheese frosting, they were great! I am so excited to be able to serve cupcakes everyone can eat, I don't have to worry about contaminating my kitchen, and can even keep leftover to eat ourselves...
  8. Mom-of-Two
    The Betty Crocker calls for butter- would you say use the butter, or coconut oil? That is what we use in other cooking and baking often times.
  9. Mom-of-Two
    Because our Walmart had the Betty Crocker gluten-free cake mixes today, I went ahead and got several boxes including one to bake today and try (party is Saturday). The box says it only makes 12 cupcakes so I had to get 4 boxes, but still more cost effective than many gluten-free products. I went with the chocolate/devils food, was going to do both yellow...
  10. Mom-of-Two
    My 8 year old's birthday party is this weekend, want to make gluten-free cupcakes with homeade cream cheese frosting (probably vanilla and chocolate). I have access to just a few kinds at the store, in fact our local grocery has no gluten-free mixes- no time to order online. I believe Namaste is at the store, we made their spice/carrot cake and it was AMAZING...
  11. Mom-of-Two
    Just wanted to post an update on us- I decided to take my celiac doc's advice, and keep the house gluten free to make it easier/safer for me. It was really not a huge transition, and once it was underway I decided I better do follow up tests on my daughter since her gluten would be limited to outside the house- the dr had ordered retest of the ttg, running...
  12. Mom-of-Two
    Just moving this up on the list, in hopes others would see my update in prior post
  13. Mom-of-Two
    Follow up: Low on vitamin D- level of 27 Iron normal CBC- high % lymphocytes?? ttg: 44 (<20) her level 3 months ago at initial test was 78.20 so my guess is not eating gluten at home for a couple weeks took her down?? Endomysial: :Confusing. My result was pos or negative, didn't expect to see a value there but her result was 1:40 and it states...
  14. Mom-of-Two
    I asked BOTH pediatric GI's about the possibility of her having another autoimmune disease, since all we have to go on right now is elevated ttg- I had the retest today so maybe it will show EMA, maybe a different ttg level than 3 months ago as a reference point. She was tested for juvenille arthritis 18 months ago, SED rate for inflammation, etc because...
  15. Mom-of-Two
    The gene test was denied by our insurance, but the GI appealed and is pushing to get it done, just for the knowledge. I clearly realize there is no gluten light with celiac, as I do it myself every day and have been dilligantly gluten free over 5 months since my own endoscopy. Our home is gluten free as well. The reason we are holding off the FULL...
  16. Mom-of-Two
    In the never ending saga of my 8 year old's celiac process, they said I can have her re-tested for her tTG, and also test EMA because it was not on her first test, which was three months ago (the first GI only ran tTG). So I will be having tTG, EMA, Vitamin D, full CBC w/diff done I believe, per the new pediatric GI to see if her tTG levels have done anything...
  17. Mom-of-Two
    My own personal advice, have her scoped. However, know that she is very young and may not show any damage, also it is very patchy in children- so, it is difficult to really know what is actually there that was missed! It is absolutely frustrating, the process of diagnosing celiac disease! I had my children tested after learning I myself have celiac, not expecting...
  18. Mom-of-Two
    I have been using with great results, the Source Naturals digestive enzymes. I have a hard time remembering to take them before each meal though! That sounds so promising, the enzymes for celiac treatment, just for the sake of CC I mean-- it would take the anxiety out of the diet for sure, just having a safety net to feel like you can eat out of the house...
  19. Mom-of-Two
    YES! If your daughter has the celiac gene, even if you don't get the positive lab/scope results you are looking for, YOU should be tested yourself! She got that gene from someplace and it would give you one more clue to the puzzle! That is how we found out my 8 year old was positive (no symptoms), because I had the kids tested after finding out I have celiac...
  20. Mom-of-Two
    You said you have been "close" to gluten free and it's only been 5 days- if so, I suggest you get a celiac test so you know what you are dealing with. It may also help for your husband to understand, if you do indeed have a problem. Get tested! And never share food Feel better!
  21. Mom-of-Two
    What did her normal diet include? Kid friendly foods: Ian's chicken nuggets Annie's gluten-free mac and cheese Tinkyada noodles are eaten just the same by my glutenous pasta lovers gluten-free pretzels, Glutino or Snyder's Van's waffles PBJ on gluten free bread Grilled cheese Chex cereals Pirate's Booty...
  22. Mom-of-Two
    Is it normal to take longer to be rid of these symptoms, if they are indeed due to gluten? I have been gluten free 5 months now, at my 3 month follow up my labs were drastically down, I have been very diligant. My biggest issues are related to irritability and stress. Overwhelmed and anxious easily, mood changes, etc which I was hoping would be gone by...
  23. Mom-of-Two
    3 years of bloating and pressure way up under my ribs is what led me to a celiac diagnosis. It too often felt like it was pushing up on my chest, I also had pain between my shoulder blades all the time- I had concerns about gallbladder since it's so common in women, but my dr kept saying it's not the gallbladder, ultrasound showed no abnormalities, and all...
  24. Mom-of-Two
    I agree! I couldn't do it without my husband, who is absolutely 200% supportive with my celiac, and even went gluten free himself when I started. (he had his own reasons too, psoriasis, etc) but I couldn't be with someone who didn't get the seriousness of it. That makes me think about my 8 year old who is just starting down this gluten free road and...
  25. Mom-of-Two
    I was not saying that a gluten free diet was not healthy, or would make her sick- I was referring to her getting accidental gluten and having GI symptoms she does not currently have. My only point is that I don't want to comitt her to a lifetime of a strict diet, until we are 100% certain that is the case- our pediatric GI says that she could have another...
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