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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    I too had positive blood tests and negative biopsy. I had tons of symptoms (for 5 years) and all seem to go away on the gluten free diet. I was "technically" diagnosed with gluten intolerance. Don't let your negative biopsy be "permission" to cheat on the diet. You very likely have celiac disease, it just wasn't found (maybe damage missed, maybe not...
  2. Cara in Boston
    I had the same experience. I felt GREAT the first few days, then, for about a week, I had extreme fatigue. I was irritable and cranky. Hungry, but no appetite. Headache and brain fog. It was WORSE than being pregnant. Then, after about a week, each day got a little bit better. After about a month, I felt pretty good most days. Then I had a setback...
  3. Cara in Boston
    At the very least, your son is gluten intolerant (as shown by the positive blood test). The endoscopy is not 100% accurate - they may have missed the damage or perhaps there is no damage yet. Most doctors are not trained in nutrition, and your doctor is clearly wrong about the gluten-free diet. It is EASY to put on weight (gluten-free processed food) and...
  4. Cara in Boston
    My son tested negative on all tests except the IgG ones and he was found to have extensive damage even though he had very few symptoms. He was NOT IgA deficient. While researching Celiac (before his endoscopy) I found a book that had a chart of all the blood tests and where they lead. If I remember correctly, a positive result on the TTG IgG lead to...
  5. Cara in Boston
    I think it is different for each person. My blood test went from positive to negative within two weeks of being gluten free. My son's numbers barely moved after 6 months. At that time we "stepped it up" a bit, eliminating "questionable" things like gluten-free food that was "processed in a facility that handles wheat" and we stopped eating out - even...
  6. Cara in Boston
    I was tested for MS a few years before I tested positive for Celiac. Strangely, when they ruled out MS . . . they didn't keep looking for a cause. They just said, "maybe you get dizzy when you are dehydrated, make sure you drink more water." and stuff like that. They even prescribed medication for motion sickness (I never took it). But once they ruled...
  7. Cara in Boston
    I know - it is crazy. My younger brother is experiencing some of the same symptoms I had (neurological) and they are doing all the tests (and completely freaking him out) that I had 5 years ago (MRIs, tests for MS, etc.) I keep telling him to just stop eating gluten but since he had a negative blood test (just one, not the complete panel) he doesn't...
  8. Cara in Boston
    Don't change your diet BEFORE you see your doctor - it is important to be eating gluten regularly before you begin the testing process. It may also be helpful to find out some of your family medical history before the visit. Any autoimmune issues in your extended family? Anyone diagnosed with vague things like IBS, Chronic Fatigue, etc.? Write a list...
  9. Cara in Boston
    Kids are very resilient . . . my son and I both went gluten free when he was 5. I was pretty upset about missing out on my favorite foods - and all the social stuff (eating out, pot lucks, etc.) but when I thought about my child, I was even more sad. How many birthday parties, school celebrations, etc. were still ahead of him. I imagined him feeling totally...
  10. Cara in Boston
    I would not give it to my child. It is not a healthy solution. Kids should not require things like pediasure daily to be healthy. I also don't believe kids should just be treated with meds for reflux, eczema, constipation, etc. Doctors should be looking for the CAUSE and not just treating the SYMPTOMS. It sounds like you are totally on top of his diet...
  11. Cara in Boston
    They make little cards in different languages (just google it) for celiacs to take when they travel . . . then you just hand it to the waiter and they can read it. Not sure if they have one for Bulgaria, but I bet you could find someone to translate one for you. You could type it out and take a copy with you when you go out. Cara
  12. Cara in Boston
    Welcome - We have been gluten free for 1 year and three months. It was hard and overwhelming at first, but once you start feeling better, you get really motivated to get it right. Now it is a piece of cake and I really don't miss out on much. Here's what NOT to do: Don't just go to the store and buy all the Gluten Free food you see - you don't really...
  13. Cara in Boston
    My doctor (BIDMC Boston - Celiac Center) said 4-6 MONTHS. I gave up after 3 months and did NOT have a positive result. (original blood test was positive, went gluten-free for just two weeks, subsequent blood test was negative, additional blood test after 3 month negative as well.) I've been "technically" diagnosed with gluten intolerance since all my...
  14. Cara in Boston
    Yeah, my blood went from positive to negative in just 10 days . . . did a gluten challenge, only made it two months, but by then my symptoms were all back and my son had been diagnosed so I gave up. My blood test was still negative. My son, however, was still highly positive after 6 months being gluten free - and he has almost no symptoms. Weird...
  15. Cara in Boston
    My younger son has celiac (diagnosed by biopsy) and I was diagnosed with gluten intolerance (positive blood, negative endoscopy). I know I have celiac too, regardless of the test. All my symptoms (there were many) have gone away now that we are gluten free. My older son tested negative on all the blood tests but our doctor wanted him to have the endoscopy...
  16. Cara in Boston
    My son is now 7 and I have found that after a year of being gluten free, he is MUCH more adventurous than my other son. He will try new things and take a few bites before deciding. Other son (9) dramatically holds his nose and makes a big deal out of everything. While my son likes most vegetables, he doesn't eat as much green as I would like. We make...
  17. Cara in Boston
    Not sure how long you were gluten free before the challenge but every doctor I have had recommends a 4-6 month challenge . . . one month does not sound long enough to be able to trust the test results. If you felt better gluten free, stay gluten free. Cara
  18. Cara in Boston
    With a diagnosis of IBS, you should at least be tested for celiac. Symptoms can be inconsistent - they can even seem to "go away" for months or years - only to return much worse. I can't really think of a reason NOT to be tested. Just be sure you get all the right tests, or you may rule out celiac when it is actually the real problem - false negatives...
  19. Cara in Boston
    After 6 months gluten free, a two week challenge is not long enough. Even when symptoms return quickly, it can be much longer for it to show up in the blood or do any visible damage. You would need to do a challenge for at least 3 months, more like 6 months for even a chance at an accurate test. My son's doctor (Specialist at the Celiac Clinic at Children...
  20. Cara in Boston
    I was on acid blockers for about two years (was told I would take them for life) for GERD and they never really helped 100%. Turns out it was celiac all along and simply eliminating gluten from my diet solved the problem. Within days I was able to stop taking the meds and haven't had any problems since. Why do doctors treat the symptoms rather than find...
  21. Cara in Boston
    Find a new doctor for your son. Even if you had no family history, he has symptoms that could be celiac so it is not unreasonable to test for it - especially since all the alternatives are not working. See if you have a celiac support group in your area that could recommend a good GI or even a dermatologist that is familiar with DH. Given your positive...
  22. Cara in Boston
    Glad you got answers. I just re-read your original post - with your symptoms, you should go gluten free with your daughter. Not only will it give her a "partner" in this adventure, I think you will be amazed at how much better you feel. Don't forget to get everyone tested before you change the way everyone eats at home. Cara
  23. Cara in Boston
    Good for you (and GREAT for her) Be prepared for some ups and downs in the first few weeks. There can be withdrawal symptoms that look worse then gluten symptoms. Don't assume that the diet is not working and give up on it. Also, after a period of time being gluten free, your daughter is likely to become more sensitive to even smaller amounts. When...
  24. Cara in Boston
    Worrying about the endoscopy is MUCH worse then the actual procedure. I remember bits and pieces of the procedure but most of it I think I was out . . . actually, I don't remember most of the entire morning (being picked up by my husband, walking to the car, picking up lunch on the way home, etc.) It is a piece of cake - you will be fine. I think...
  25. Cara in Boston
    My son (7) and I have celiac. We have been gluten free for a little over a year. He gets very few (if any) GI symptoms when accidently glutened - we mostly see a change in behavior that lasts several days then gradually gets better. We can usually figure out a problem (like trouble with a new product) because we both feel bad after eating it. It is sometimes...
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