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
    Thanks so much for all the info. My brother actually came across this post while poking around on the web looking for information. He thought it was funny when he realized it was about him. He is in Boise and I am in Boston. Just an update . . . Neurologist looked over MRI images and said they look fine - no need to test spinal fluid as he saw...
  2. Cara in Boston
    You could also see if there is a bakery in your area that could make you a cake. We have one that does gluten/dairy/nut free cakes and also a new "Paleo" bakery that is gluten free. When we were celebrating my son's birthday that happened to coincide with a family wedding, we ordered an almond flour cake (small, because it was expensive) to have at the...
  3. Cara in Boston
    Sounds like you are graduating soon - you will be pleasantly surprised how life changes after high school and how much it really doesn't matter if your were one of the "popular" kids or not. Hang in there. Cara
  4. Cara in Boston
    After a very positive blood test, I was gluten free for about 2 weeks. After that, I tested negative. After a 3 month gluten trial (doctor suggested LONGER but I felt too yucky) I still tested negative. I stopped after that and went gluten free. My son has celiac (diagnosed by blood and endoscopy) and since I had all the classic symptoms (that disappeared...
  5. Cara in Boston
    I've read several of your posts and almost all seem to be about the mean/abusive/inappropriate behavior of the other kids in your youth group. It does not sound like the adults involved with this group are doing an adequate job protecting (emotionally and physically) you and the kids sound like a bunch of jerks. If this group is not mandatory (like school...
  6. Cara in Boston
    Even though I've told our extended family over and over that my son and I cannot eat anything prepared in a kitchen that is not 100% gluten free, they still kept trying. I know they were trying hard to make us feel included, but it was really just a waste of time and money. When my son's 6 month blood test came back higher than the doctor wanted, she...
  7. Cara in Boston
    Get everyone tested (even kids with no symptoms) BEFORE you make any changes in diet. The symptoms certainly sound like they could be related to celiac and since several in the family have symptoms, it seems even more likely. Once you finish the blood tests, if anyone is positive, the next step is endoscopy. I would pursue testing as far as possible...
  8. Cara in Boston
    Neither of you got the full panel so neither of you can rule out celiac. Also, even a week of being gluten free can make the blood tests less reliable. Cara
  9. Cara in Boston
    Ground flax = flax meal. We buy Bob's Red Mill. We've been making a different "flavor" every day. I think I will take your idea and have my boys rank them best to worst. (but they have all been good.) They are a weird texture . . .when warm, more like a cross between a muffin and bread pudding. When cool, they are like a very dense muffin. Not light...
  10. Cara in Boston
    I like the food critic idea - my son would enjoy that - maybe create a kid's blog or something. One last suggestion: when we started out, we simply found acceptable gluten-free alternatives for the food we were currently eating instead of changing the way we eat. This was fine for my very active son, but I quickly put on about 10 pounds. The gluten...
  11. Cara in Boston
    My son is not autistic, but he had lots of "spectrum-like behaviors" and was assessed three different times (as a toddler in EI, in preschool, and in Kindergarten) He would over-react wildly (to loud noises, smells, irritating clothing), flap his hands whenever agitated, make no eye contact, rarely initiate conversation, repeat words and phrases over and...
  12. Cara in Boston
    My son was diagnosed at age 5. We spent our waiting time (seemed so long!) trying out new foods each week so that when it came time to stop gluten 100% we were already ready with a favorite pasta, frozen waffle, etc. He also loves to cook so we did lots of cooking "experiments" making gluten-free treats and things. I think it helped him (and me) realize...
  13. Cara in Boston
    I noticed a change, but it was an improvement. My PMS symptoms got better, but strangely, my lymph nodes under my arms get swollen and painful in the days before. Weird, but after a few months, the pattern has repeated consistently. Not sure if changes are due to my age (45) or being gluten free (1 year). However, I recently went GRAIN FREE (it was...
  14. Cara in Boston
    I had an MRI for MS about 2 years before I was diagnosed with celiac. My symptoms were dizzy spells and loss of balance. About a year after that, the symptoms were numbness/tingly feeling in my fingers and toes, and briefly, pain in my hands and wrists and a lack of strength in my hands (couldn't open a jar or turn the shower knob.) Anyway, within...
  15. Cara in Boston
    Think of it as good news - most people go for years and years without knowing the problem. Also, starting the diet so young will make it easier - I can't imagine if someone told me to just give up gluten when I was a teenager or young adult (no beer?) I thought I was super organized and ready to tackle the diet when my son was diagnosed (we had lots of...
  16. Cara in Boston
    Testing certainly can't hurt, right? It starts with a blood panel. If it comes back negative and you don't want to pursue further testing, you can always try the gluten free diet for a few months and see if it helps. Cara
  17. Cara in Boston
    I took meds for GERD for over a year (sometimes 2X a day) and the symptoms would still come and go . . . could not figure out a trigger food and the meds didn't really seem to help. Was told I would be taking them for life. When my son was diagnosed with Celiac, I got tested and had a positive blood test. I stopped eating gluten then stopped taking the...
  18. Cara in Boston
    If your blood test was positive and your biopsy negative, it could just mean that there is not enough measurable damage yet (or they didn't biopsy the exact location of the damage - it can be patchy and easily missed). No reason to wait for damage. If they are looking into other reasons for your symptoms, going gluten free now should not affect that. You...
  19. Cara in Boston
    Just got back from the grocery store (Stop & Shop) and today they had tags hanging under lots of regular products that said "Gluten Free" in big, clear letters. It was not in the health food aisle, where the gluten-free "special" food is, but in the regular aisles to help with things like mayonnaise, salad dressing, salsas, chips, cereal, etc. It was...
  20. Cara in Boston
    My son (5) tested positive only on the IgG tests, and negative on all the others. His biopsy found extensive damage, so yes, it can be celiac. At the very least, I think the positive blood test means gluten intolerant, so you should start getting ready (try new foods, etc.) We had frustrating delays as well. When referred to the GI (took a few weeks...
  21. Cara in Boston
    Were you eating the equiv. of 2 slice of wheat bread a day in the 3-6 months leading up to your blood tests? If not, I would not assume that they are showing you an accurate picture of what is going on. If you don't want to (or can't ) do a proper gluten challenge (eat gluten daily for 3-6 months) I wouldn't bother trying to get re-tested. Sounds like...
  22. Cara in Boston
    You need to be eating a sufficient amount of gluten DAILY in the week/months leading up to your tests. Being gluten free, or even gluten "light" for even a short time, can change the results of the tests. Oatmeal probably wouldn't be sufficient as it is naturally gluten free and only off limits to celiacs due to cross contamination with wheat. Cara
  23. Cara in Boston
    Some doctors won't diagnose without a positive biopsy. My doctor diagnosed me based on my symptoms and blood test results (my son was just being diagnosed too, so that was another clue) but recommended the biopsy so he could assess the damage and monitor my healing. I guess sometimes it is hard to know if the gluten-free diet is working? He needed a...
  24. Cara in Boston
    Just wanted to add: I was nervous about the endoscopy too. It seemed so extreme and invasive. Except for some stitches, my son had never been to the hospital since the day he was born. Turns out it was no big deal. He had a great time (his brother was jealous!) and was back to his usual self within hours. I had one too and again, no big deal. Worrying...
  25. Cara in Boston
    Our local ice cream shop makes a big deal out of "keeping our customers safe" by washing off the scoops when asked. What bothers me is that until someone asks, the scoops are used in various tubs without rinsing, so the contamination could be in the ice cream, not on the scoop. We don't go there often. One place on the Cape (Sundae School) was FANTASTIC...
×
×
  • 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.