Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

2 Neutral

About nmlove

  • Rank
    Advanced Community Member

Profile Information

  • Gender
  1. Hi there, You've had such wonderful responses! I just wanted to support the "keep on gluten and see the GI doc first" point of view. Having had to see a variety of specialists for a number of years, two months is quite decent and such a small window in the larger picture of life. My third child was diagnosed with a "weak positive" (by weak her TTG was 60-something). The GI doc diagnosed celiac from family history (me, my mom, her two brothers). She was eating gluten alongside my husband about once a week at the time. The doc said if it had been another child, she would want to run other tests to rule out other things. We never discussed it because it was pretty obvious in our situation. I have regretted a handful of times not having an upper endoscopy done on my second son (he was diagnosed via bloodwork - extremely positive, in the 800s - almost immediately after his older brother's positive bloodwork and upper endoscopy). He's doing great now so I'm not worried but in those first few years, I wondered if there was something else going on. Also, going off gluten, as you seem pretty aware, leads to a rabbit hole of problems sometimes. Other food intolerances pop up and it's definitely hard to tell what's what sometimes. Last thing, your son is 8. You're in control quite a bit now, but think down the road. That diagnosis will help him to adhere to the diet, move doc to doc, help with school, keep you and him aware of possible problems (like my son who was recently diagnosed with type 1 diabetes, a comorbid autoimmune disease with celiac), etc. Best of luck!
  2. Thanks HannahR67! From the very little I know and have experienced, the healthiest (for anyone) is more veggies and fat, then protein, fruit, carbs in moderation. Due to celiac, we definitely eat better than the average Joe but I have a feeling his T1D diagnosis will clean us up more. Pasta seems ok for him. Lots of insulin that he typically doesn't take but it doesn't keep his bg elevated like 2 mini muffins did. He can handle oatmeal or a bowl of cereal in the morning well as long as he has some eggs or sausage and whatnot with it. For the most part he is within his normal range (starting to go low lately) so those sustained spikes are very visibly linked to those baked goods. He's enjoying some candy for his lows, paired with protein soon after of course. Thanks for a glimpse into your experience.
  3. I have heard both for the test and it isn't necessary from the doctors. My oldest had it done around the same age. The doctor said he likes to make sure they have time to play catchup before puberty. My son never had fractures, broken bones, etc. and it was found he had ostopenia! The endo wasn't overly concerned as he had celiac and was still healing get but my son did have to increase supplements. We have since moved and the new gi doc didn't feel it was necessary to retest.
  4. Is this a pediatrician or a gi doctor? I could see the reply from the one and not the other. My kids saw the gi doctor every 3months for awhile and then every six months until normal labs and now they go once a year. Doc checks not just celiac stuff (adherence to diet) but vitamin levels (particularly d and calcium), and also thyroid. Adult doctors tend to blow me off with celiac but I have never had that happen with my children. My oldest in particular struggles with deficiencies.
  5. I say chill. She's four. ☺ - says a mom to four kids. If it persists she will let you know it's a problem.
  6. So sorry you're having to deal with this! My boys took awhile to go down - year and a half. For the most part it was a gradual trending down. However, they spiked back up and had symptoms return. Like you, we homeschool and we're strict. My kids don't react much to one glutening so to have symptoms return was so frustrating. I looked at what they ate daily and it ended up being one particular item that was labeled gluten-free. Crazy. I do agree about dropping the oats for now. Try again after they are "healed" if you want and no more than half cup per day. Everyone has different tolerance to it and as stated above, some have similar reaction as gluten! Good luck!
  7. Thanks cyclinglady! I know eating clean and lower carb helps me (not diabetic thankfully but have too many risk factors). It is definitely hard to rethink carbs, fats and whatnot with my son. While I know a roll will spike blood sugar more versus an apple, is it normal to keep it elevated for that long? It maybe that in that case he needs more insulin and that's what we need to talk about at his follow-up. As I said, those kinds of foods are truly more treats as I already spend so much time in the kitchen!
  8. I'm sorry! When you find a person who tries and gets it, you will feel even more appreciative. Even with three kids with celiac - because people seem more concerned when one is a child rather than an adult - it was a huge learning curve. Even now, over six years later, I trust three people to feed my children: my mom (who later finally tested and was positive for celiac), my sister in law, and a friend who's dealt with allergies and actually talks sense when we discuss celiac and gluten. It is funny because I thought I was doing a good job as mom keeping items gluten free and I am sure I was based on healing and tests after, but when I became positive my level of awareness went even higher. I was upset for a bit that I had failed my kids before. Anyway... All this to say that you're the one who lives with it. That stinks at times but it is what it is. Keep educating but don't waste energy beating a dead horse. If they don't seem truly invested in learning, bring your own food, offer to cook or bring something. Try to find a common ground. Ask to eat first if it's a family smorgasbord. Or push your way first. Not sure what kind of family you have. I have two family members who are extremely rude and go first, not even letting little hungry kids go first! I'm at the point where I do most of the hosting now (have the space and my in-laws are older) so plan meals that are either totally gluten free or fairly easy to keep cross contamination to a minimum. Hope this helps a bit. Good luck!
  9. My 11 year old son was recently diagnosed with type 1 diabetes. He was diagnosed with celiac disease at 4. We eat a fairly clean diet, with many of our higher carbs coming from potatoes or fruit or similar. But we do have occasional baked goods or pizza. My question is eating such gluten-free items and having blood sugars go higher and remain high for awhile. The pizza I get with the fat and whatnot - the pizza effect. But he has similar reactions, though not as bad, with say, 2 mini chocolate muffins or one roll I made from scratch. I can't compare to regular gluten containing foods obviously and I am having a hard time researching it as all I find are links talking about the comorbidity of type 1 and celiac or how a type 1 diabetic gets better control going gluten free typically. Anyone with T1D can shed some insight? I definitely plan on asking at our follow-up but even through a pediatric hospital, adding gluten-free in the mix isn't always easy with those who don't have a lot of experience. Thanks!
  10. I'm in the camp that thinks it was awesome of your son to have such a great attitude about it all and know not to eat it if he doesn't know the food. That's how my oldest has been from the get-go, and now his two younger siblings are as well. Sometimes you just can't do what others can. Simple. No drama. That said, I think the teacher should have given you a heads up so you could at the very least talk it over with your son if you needed to, or you could have provided an alternative. I don't know much about the 504 plan but he's only starting school... (I homeschool so that's a bonus for us as far as celiacs.) The few school teachers I know go out of their way to accommodate kids with allergies.
  11. Skullgrl, thanks for the info. I am in the middle of reading the article. I love personal stories as it helps me visualize symptoms. A list of symptoms can really bring out the hypochondriac in me. Food bothers me neurologically as well - diagnosed celiac and dairy/egg/soy issues - so I shouldn't be too surprised if my son is too much like me. Who knows. He may have experienced stuff and I never knew since he was diagnosed so young and is only now just starting to verbalize. Even now it's not much. "My head hurts." "I need to lie down." "I feel weird." "I feel off." That's about it. His GI doc mentioned calcium deposits and seizure activity. I suppose calcium deposits are a possibility as well (due to celiac and malabsorption). When he was 6 he had a bone scan done and was found to have low calcium. He's so tall though that he really surprised his doctor. He still is tall and is over 95% on the growth chart. No one has mentioned gluten ataxia to me. I found that on my own and so did my sister-in-law nurse. I just wonder if lab tests can be normal but still have reaction at lower levels? Is that even possible? Does that make sense? Aside from the first 6 months when he was accidentally consuming gluten (thanks to rice milk) all his celiac related labs come back fine. So, so frustrating, but hopefully we'll get to the bottom of this sooner rather than later. I do have a feeling we're going to have to make our diet stricter for a bit to see if it helps. Thanks so much, Nicole
  12. Yes, Colleen! I am so glad you mentioned this. I should have but wasn't thinking. My son is 9. It's very normal to have spots as you age. Heck, you can have a ton of neuro symptoms and have a normal looking brain. (I did when I had an MRI when I started experiencing hemiplegic migraines for the first time last year!) Nicole
  13. Nicole, thank you. I will not be surprised either. It's just so darn frustrating, especially when it's your kid. His GI doc talked about calcium deposits and looking at seizure activity because of it. Apparently you can have seizure activity and not know it. Hopefully this neuro doc is OK and not a waste of time. Nicole