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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    A negative biopsy only means damage was not found, not that it was not there. The biopsy can only confirm a celiac diagnosis, not rule it out. If you have symptoms and a positive blood test, the "final test" would be to try the diet. If your symptoms resolve (and your blood returns to normal) you can be 100% sure. It is much more likely that your biopsy...
  2. Cara in Boston
    Your child has symptoms AND a very positive blood test. It is likely that your child has celiac disease. (I would guess you do too, given your issues as well.) Get a new doctor. The reason they give the whole panel of tests is because everyone reacts differently and giving a variety of tests makes it more likely that the problem will be uncovered...
  3. Cara in Boston
    To save time, here's the text of what was in our 504 plan: Information for 504 Plan for Celiac Disease Joseph XXXXX Date of diagnosis: March 2011 Amount of time on a gluten-free diet: 3 years OVERVIEW OF CELIAC DISEASE Celiac disease is an autoimmune disorder that damages the small intestine and interferes with proper absorption of nutrients...
  4. Cara in Boston
    Your story sounds much like ours. Our teachers were great at being accommodating, but if there was a mistake, I had no recourse without a 504 plan. Once I looked into the plans, I realized how much could go wrong and knew it really had to be in writing. As your child gets older, things like missed school days will also become more serious. My son...
  5. Cara in Boston
    I have a 504 plan that we created for my son when he was first diagnosed (1st grade). I'd be happy to email you a copy. I used advice from this list and others. Send me an email at myboytom@yahoo.com and I'll send it to you. Our rule is he only eats food from our house AND pre-packaged foods that say "gluten free" clearly on the label. And even then...
  6. Cara in Boston
    Sounds like you didn't get the whole panel. My son was positive on 2 of the 5 tests (only the IgG tests) and I was the opposite, positive only on the IgA tests. His first doctor said he couldn't possibly have Celiac because he had no symptoms (normal growth, no GI issues, etc.) and thought I was just looking for an excuse for his behavior. ("You've been...
  7. Cara in Boston
    Doctors run a panel of tests because everyone is different and immune systems behave differently. You only need one positive test. My son was negative on all the IgA tests and positive on only the IgG tests. I was the opposite. Positive only on the IgA tests. We both have celiac. He had a positive biopsy, mine was negative. A negative biopsy only...
  8. Cara in Boston
    My son was diagnosed at age 6 (blood test and biopsy) and his ONLY symptom was behavior. "Rage" is a good word for it. You could also describe it as "slight frustration = major tragedy" or "inconsolable irrationality" He was just a mess. Within a week of being gluten free we had our (relatively) normal little boy back. Three years later and he is doing...
  9. Cara in Boston
    My 9 year old was diagnosed at age 5 with positive blood tests (IgG only, negative on all the IgA tests) and biopsy. The first doctor didn't believe he had Celiac despite his positive blood test because he had no symptoms and was not underweight. He speculated that maybe there was a lab error. (By that time, I had a positive blood test myself, so there...
  10. Cara in Boston
    Again, even if the blood tests are still negative, you have nothing to lose by trying the diet. Give it three months and see if you see improvement. Also, Celiac damage can cause people to be (temporarily) lactose intolerant. This usually goes away when the intestines have had a chance to heal.
  11. Cara in Boston
    My son was negative on the most common Celiac blood tests but was positive on the two that dealt with IgG (rather than IgA). If he had not been given the complete panel of tests, we would have missed it. He also had no classic symptoms. The doctors were puzzled, but we got our answer when he had a "highly positive" biopsy after an endoscopy. His symptom...
  12. Cara in Boston
    A positive blood test is a positive blood test. That the endoscopy was "not suggestive" does not rule out Celiac (the scope can only confirm it). Many doctors want to wait until there measurable damage before starting the diet. If your daughter is already having symptoms, why wait. Yes, the diet is not easy . . . but it sounds like you already know...
  13. Cara in Boston
    I felt like our lyme diagnosis journey was VERY similar to our Celiac diagnosis journey. Odd/conflicting blood test results, un-informed doctors, lots of "evidence" but some doctors rigidly sticking to outdated information. In fact, if I hadn't already been through it with his Celiac, I probably wouldn't have thought to even question anything the doctors...
  14. Cara in Boston
    You already have enough information (positive blood test, positive response to diet) to know you have celiac Disease. If your doctor agrees, have it put "officially" in your medical file. This will only be important if you are hospitalized and require a special diet (or enter the military or get put in prison?) Other than that, you are 100% in control of...
  15. Cara in Boston
    Has he been tested for Lyme? My celiac son complained of similar symptoms for almost a year. They symptoms were so similar to his celiac symptoms (fatigue, joint pain, general luckiness) that we were tearing apart our house looking for the hidden gluten. When we determined through blood tests that it was not being caused by gluten, we started looking elsewhere...
  16. Cara in Boston
    My blood test went from positive to negative after only two weeks being gluten free. The doctor wanted me to do a challenge and then be re-tested. He said the challenge needed to be 4-6 MONTHS long to be certain. I was already feeling fantastic so I was skeptical about returning to my previous symptom-filled life for 6 months just to get an official diagnosis...
  17. Cara in Boston
    Keep in mind that you could have the biopsy and it could be negative, but this does not rule out Celiac Disease. It might just complicate the issue, especially since you are already gluten free. I started the testing process after my son was diagnosed. As I learned more about it, I realized that I had many of the classic symptoms (except weight loss...
  18. Cara in Boston
    You don't need a positive biopsy to get accommodations in schools, you need a positive diagnosis. If your doctor is willing to diagnose her based on her blood tests and her (hopefully positive) response to the gluten free diet, then you are all set. Those two things are enough to be certain, but some doctors hold out for a positive biopsy. You could also...
  19. Cara in Boston
    Yes, I'm guessing that you are still getting gluten from cross-contamination (cooking pot, colander, utensils, etc.)
  20. Cara in Boston
    My son had little or no symptoms too. He complained for about a week of having a stomach ache. Other than that, the only thing we saw was a drastic change in behavior . . . tantrums, easily frustrated, no impulse control (not uncommon for kids) Once he went gluten free, he was back to "normal" in less than a week. Then, we started noticing other...
  21. Cara in Boston
    You need to get the proper tests done - there is a whole panel of blood tests needed. Make sure you doctor doesn't skip any. Also, you need to be eating a regular diet until the testing process is over. It took several months for my son and several weeks for me. Do not go gluten free until you are done with testing. While you are waiting, find out...
  22. Cara in Boston
    Yes, it is not uncommon to become more sensitive to even smaller amounts. Your symptoms can change and become more severe too.
  23. Cara in Boston
    My son was negative on all the tests you listed but positive on the TTG IgG and DGP IgG tests. HIs biopsy was also positive for Celiac. My results were the opposite, positive for the IgA tests and negative for the IgG tests. Looks like you didn't get the full panel, so you cannot rule it out. I have no idea what "sensitive to gluten at times" means...
  24. Cara in Boston
    There are also people who don't have the genes but still get celiac. The genetic test actually slowed down our testing/diagnosis process. The first MD we saw was skeptical that my son (then age 6) had it since he had no classic symptoms and was average height and weight. He could not explain the positive blood tests, so he did a genetic test. The genetic...
  25. Cara in Boston
    You are one of the lucky ones that has a doctor who understands that the biopsy can be negative and this does NOT mean you don't have celiac. It just means damage was not found (not yet, or maybe it was missed, lots of reasons.) All first degree relative should be told and they should get the blood screening done even if they have no symptoms at all...
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