Jump to content

Cara in Boston

Advanced Members
 View Profile  See their activity

  • Posts

    679

  • Joined

  • Last visited

  • Days Won

    1

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by Cara in Boston

  1. Cara in Boston
    You should consider this good news. You have celiac and you can start on the road to recovery very soon (as soon as they take your blood.) You will be amazed at how much better you feel. I didn't even realize some of my symptoms were symptoms - I just thought I was getting old and tired. You are lucky your doctor is so sharp. Everyone in your family...
  2. Cara in Boston
    I see 4 positives there . . . and the one kid that is negative was gluten free before testing so I wouldn't consider his tests to be useful. A "weak" positive is a positive. My son tested negative on all IgA tests . . . even though he does not have a deficiency. Only his IgG tests were out of range. This was confusing to the pediatric GI that we saw...
  3. Cara in Boston
    A drastic change in behavior is what led us to the doctor in the first place. My then 5 year old suddenly went from being a "typical" boy (no angel) to having terrible melt downs over seemingly insignificant things (wrong toy in happy meal, legos didn't fit together, socks were too hard to put on . . .) He was angry all the time and his tantrums included...
  4. Cara in Boston
    All your symptoms certainly could be related to gluten. After a lifetime of going to the doctor only once a year for a check-up I was suddenly going every 6 months with weird and alarming symptoms. I was referred to specialists (cardiac, neurology) but nothing unusual was ever found. I was never sent to a GI, even though I had GI issues . . . my doctor...
  5. Cara in Boston
    You have a great doctor - one who recognizes the fact that you can "test" negative but still have celiac disease. With that in mind, if your biopsy happens to be negative, it only means that no damage was found, it does not mean you should continue eating gluten. With your symptoms and family history, it is logical that gluten is probably your problem....
  6. Cara in Boston
    I had no problems until after my second child was born (age 38). Suddenly I had a very "sensitive" stomach - I was always in the bathroom. I never mentioned it to my doctor, just thought I was getting old. Then, over the years, I had one medical problem after another . . . always alarming, doctor would send me to specialists, they never found any problems...
  7. Cara in Boston
    I believe the normal blood tests mean that no autoimmune reaction is happening . . . not necessarily that everything has healed. My son took a full year to have normal blood results. The doctor was not overly concerned - she said it is different for everyone. We just went in for our 2 year check-up and his numbers are still good. She did run tests for...
  8. Cara in Boston
    We gave up on sandwiches . . . now we do more of a "snacky" lunch. Cubes of ham or chicken, cheese, and maybe some crackers or pretzels. Always add a fruit. Leftovers are great too. About once a month I make a big batch of gluten-free mac and cheese and freeze it in individual size portions. Take one out of the freezer the night before, heat it in the...
  9. Cara in Boston
    Your son should be tested anyway, because of your positive blood test. For us, the only symptom my son had (at age 5) was a drastic change in behavior. However, we have noticed that since being gluten free, his sleep habits are much better and his hair has changed completely. Went from fine and limp to thick and wavy. Before I was diagnosed, I would...
  10. Cara in Boston
    Find a good celiac doctor to test your son - and any other kids you have. All first degree relatives of someone with celiac should be tested regardless of symptoms (or lack of symptoms.) My doctor said every 2 years, sooner if symptoms develop. Allergy tests will not be helpful at all in determining if someone has celiac. The genetic test will only give...
  11. Cara in Boston
    For a child that young, it is important to get a doctor's diagnosis - it will ensure that schools, camps, colleges, etc. all comply with your request to keep her gluten free. A doctor CAN diagnose with only blood tests and response to diet. I think it is fantastic that your doctor feels this is enough information. Many doctors require a positive biopsy...
  12. Cara in Boston
    She could very well be sensitive to gluten and still come up negative on all tests. Think of the diet as the "final" test. Stick with it for three months. You have already noticed a change . . . It might be helpful to keep a diary of her symptoms. Sometimes a reaction can happen days after gluten was ingested. It helps to have it written down so...
  13. Cara in Boston
    I have one son with celiac and one without. My celiac son complained for a YEAR of not feeling well (fatigue, joint pain, etc.) and I assumed it was from gluten - somewhere in our gluten-free house. We restricted his diet even more (no processed foods that were not specifically gluten-free), no eating out, etc. etc. I was at the point were I was going...
  14. Cara in Boston
    I just spoke to our celiac doctor today. Joe's test found him to be low in D (not unusual in Boston in January) and she recommended 2000 units a day for the rest of the winter. If he tests normal in a few months we can reduce it. May have to bump it up again in the fall when the weather changes again. cara
  15. Cara in Boston
    Well, behavior was our ONLY symptom, and it changed almost immediately. It was like I had a totally different kid. Once the drastic behavior stopped, other changes were more gradual. (sleep, appetite, growth - things we didn't really notice were off, but they were.) For me, my symptoms were gradual too. The GI stuff was almost immediate, the brain...
  16. Cara in Boston
    My son only eats food that either I prepare (in our 99% gluten free kitchen) or that is pre-packaged and labeled gluten free. He doesn't even eat any foods that are "prepared in a facility that processes wheat". At first it was a pain, now it is just second nature. I invested in some fantastic food storage containers and bento boxes and he just takes his...
  17. Cara in Boston
    Your blood tests very clearly indicate that you have celiac. Being a first degree relative makes it even more certain. Our doctor talked us into getting the endoscopy because it would give them a "baseline" to measure future healing. However, be aware that a negative biopsy does NOT mean you don't have celiac - it just means damage was not found (could...
  18. Cara in Boston
    Did you feel better when you were gluten free for two months?
  19. Cara in Boston
    Two positive blood tests are more accurate than an endoscopy. Of course, if the biopsy comes back positive, you will have no doubts. But if it comes back negative, you will always wonder. There are many reasons a person with celiac disease could have a negative biopsy (human error, no measurable damage yet, biopsy wrong place, etc.) Having a negative...
  20. Cara in Boston
    I just wanted to add: Don't be surprised if your dentist knows NOTHING about Celiac Disease. When my younger son was diagnosed 2 years ago, I immediately suspected my older son had it too, based on his discolored teeth. Over the years, the doctors noticed the discoloration, but no one ever figured out a cause. Our pediatric dentist had never even heard...
  21. Cara in Boston
    My youngest son and I both have celiac. We were told to test my other son every two years, or sooner if symptoms develop. While this sounds simple enough, my younger son had almost zero symptoms when he was diagnosed. Our only clue was a drastic change in behavior. My older son is 10 and due for his "check up test" next week. It is hard to know if he...
  22. Cara in Boston
    Everyone is giving you good advice and you are right to follow your instincts. A positive is a positive . . . the ranges are there for a reason and if she is out of range, the test is positive. The fact that she was already gluten free for two months makes it much less "borderline" - her numbers must have been very high to still be getting a positive test...
  23. Cara in Boston
    Please get a new doctor if possible. Also know that any future tests, once going gluten free, will no longer be accurate, so a future negative test does not mean you don't have celiac. Both my son and I have it and we react differently to different amounts. My son is VERY sensitive, so we avoid any possibility of cross contamination. We don't eat out...
  24. Cara in Boston
    My son was negative on all IgA tests (but was not deficient) and positive on only the IgG tests. He had zero GI symptoms - his only symptom was an extreme and sudden change in behavior. The first doctor said he did NOT have celiac based on his blood test (and his genetic test said "low possibility" too.) When he couldn't explain the high IgG tests, we...
  25. Cara in Boston
    Since a huge number of people have celiac but have zero symptoms, it does not make sense to wait for symptoms. Especially for a simple blood test. Our son's doctor said all first degree relatives should be tested (regardless of symptoms) every two years . . . or sooner if symptoms develop. Second degree relatives should be tested if they have any symptoms...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.