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Sesara

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Sesara

  1. Sesara
    I understand what you mean about reading everything you can find. I'm a research junkie, and I hate being the pushy mom - I was able to believe that my son was "fine" until his diarrhea stretched on for months, I was convincing myself and everyone else, because my pediatrician was so unconcerned by the fact that he'd fallen from 80th to 8th percentile for...
  2. Sesara
    BTW, in the course of my own reading, I discovered that people who are IGA deficient are 10 to 15 times more likely to develop celiac disease. It is an immunodeficency so they are also prone to other issues, so if your son is IgA deficient, you may want to read up on it.
  3. Sesara
    I'm just having a thinking day today. This forum has been so helpful at understanding how to navigate the whole testing process. I am planning on printing out a couple of the studies that you have linked, as well as the University of Chicago diagnosis fact sheet which recommends 5-6 biopsies and tell him I'm expecting him to perform more than the 1-2 "standard...
  4. Sesara
    I am wondering if, when you say you can tolerate no food, you mean that the food feels like it won't go into your stomach? And you are burping/regurgitating the food back up? If so, along with the intense chest pain you describe, I'd look at the condition known as achalasia.
  5. Sesara
    We have our endoscopy/biopsy scheduled for next Tuesday for my DS, and pretty much are planning to start a gluten-free diet as soon as the biopsy is over. If it fixes nothing, and the test results come back negative, then we can re-evaluate, but my thought is definitely to get him healing as quickly as possible. While we were in referral limbo, we did gluten...
  6. Sesara
    Just want to add that if you have a latex sensitivity (I do), nitrile gloves are also a great choice.
  7. Sesara
    Can you figure out a way to add a little more healthy fat to his diet? Fat = satiety, and by the list you've given, ham is the only thing on there with much fat in it at all.
  8. Sesara
    Sigh. Just got off the phone with the nurse...basically, they don't see anything wrong with his IgA, and they don't do further screening unless his biopsy comes back inconclusive. Also, the doctor will likely take 1-2 biopsies from the esophagus, 1 from the stomach, and 1-2 from the duodenum, so 3-5 total. I mentioned the study and she told me that if he...
  9. Sesara
    Well, I have left a message at my GI's office asking them to call me back so we can talk about why they didn't do the genetic testing, if it's possible to do other antibody testing, and how many biopsies Dr. is planning on taking. Hopefully I'll get a call back today, though I can't get all my questions answered until tomorrow since the Dr. isn't in til Tuesday...
  10. Sesara
    I found this article very informative, especially the fact that testing the EMA IgG antibodies yielded such accurate results in diagnosing celiac disease in individuals with IgA deficiency. Open Original Shared Link Also, IgA deficient individuals have a 10 to 15 times higher incidence of celiac disease than the general population. And it definitely...
  11. Sesara
    That's good to know. Yes, I feel pretty frustrated with how limited a Celiac panel they did...I was really hoping, having read positive things, that they did a antigliadin test, but I know that it's a newer one. And I've disappointed that they didn't do a genetic screening, as far as I know, since that would have been suggestive one way or another and would...
  12. Sesara
    Well, I'm just going over the bloodwork results that came today. While the Celiac panel itself was unremarkable, a few other things stood out to me. Apparently his celiac panel was not very detailed. He had an IgA level of 67, where normal is 21-291. His TTG IgA level was 2 where <20 is negative, and 20-30 is weak positive. On his metabolic...
  13. Sesara
    Are you sure that it's sucrose and not fructose? I know that lactose and fructose intolerance are both linked to celiac and usually brought on temporarily by damage to the intestines. Once the intestines heal, the ability to process these things is usually regained. My DS has his scope in another week and a half, but those two intolerances are something I...
  14. Sesara
    I will call back the office and ask if they can mail or e-mail me a copy. Thanks. I guess it does make me feel better about agreeing to have the scope so that they at least get a chance to look at what's going on in there. And then we will be definitely going gluten-free to see if it makes a difference, regardless of the results. I'm using up my pantry...
  15. Sesara
    Sigh. I just got a call back from the pediatric GI's office and it was like pulling teeth to get details...at first, all she was going to tell me was that all his tests came back "normal", without even explaining further. So then she told me they did a CBC, normal, liver function was normal, thyroid levels were normal, Celiac panel was normal. I asked about...
  16. Sesara
    Well, I know my mom's goiter developed during pregnancy, which is apparently common with Hashimoto's, and from the symptoms she's described, she always told me that it was hypothyroid, not hyper, which is why I assumed Hashi's. Open Original Shared Link But be that as it may, it's definitely food for thought. I'm hoping to get back our bloodwork results...
  17. Sesara
    If you ever wanted to attempt it (just because it's something I've thought of doing for my brother's fiance, who is lactose intolerant), you could try making creme fraiche ice cream. You just need to buy fresh cream, and then stir in a little bit of buttermilk and let it sit in a warm place overnight, and voila! A nice big batch of creme fraiche can be yours...
  18. Sesara
    Has he tried some of the coconut ice cream on the market? That stuff is just tasty, I don't care if you're lactose intolerant or not!
  19. Sesara
    Just asked my mom about her thyroid issues - she had a goiter and they told her that her white blood cells were attacking her thyroid at the time. Now this being the late 70's, they never told her an official diagnosis, but from what I'm reading, it sounds an awful lot like Hashimoto's, which seems to be the primary related thyroid issue to Celiac from what...
  20. Sesara

    ARCHIVED Restaurants

    Sesara replied to Minette's topic in Gluten-Free Restaurants

    As a former restaurant chef, while I would say that there's no 100%, if you talk to the chef, and they have a decent understanding of the issues of Celiac and gluten free, you might be able to trust things. In my former non-SAHM life, I had a number of regulars at my restaurant who were gluten free, a few who were celiac, and I totally respected their...
  21. Sesara
    I've read that, but unfortunately, it didn't seem to help us, since DS was breastfeeding when gluten was introduced...I can't pinpoint exactly when, maybe around 8 or 9 months, but I continued (and continue) to breastfeed him, and unfortunately it doesn't seem to have protected him in this case (and I am well aware that doesn't mean that breastfeeding still...
  22. Sesara
    I will definitely ask at our follow up visit. I do appreciate the feedback - it's all a little overwheming, as I'm sure you understand, and I'm trying to do everything "right". All the while, I feel so unsupported from all sides - DH is at least coming around to the idea that we'll have to stop eating gluten at home, but it'll be up to him to avoid it at...
  23. Sesara
    Well, I have my own GI, and depending on what results we get with testing, I'll probably be following up with them. But I guess my point is that since most GI's won't give you a diagnosis without a scope, and there's really no way for me to not go gluten free or very lite with DS, since I'm a SAHM and take cross-contamination very seriously, I don't know...
  24. Sesara
    We are in the same boat as you...Tuesday, we had the blood work done on my 21 month old, and they have already scheduled a biopsy and seem fairly confident that we are probably getting a Celiac's diagnosis out of this. We actually already had to do a CF test, and I was terrified by it - it's a normal reaction, and I can't even begin to detail me relief when...
  25. Sesara
    I guess I don't see the point of us getting tested at this juncture. I hate to base it on this, but endoscopies are expensive and we each have a deductible with our insurance to meet, plus I'm currently 27 weeks pregnant so being sedated for an upper GI isn't even a good option for me. If my son goes gluten free, we'll be doing gluten free with him out of...
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