EmiPark210

I've had an ADHD diagnosis since I was 7 and I had the same hope that once the brain fog cleared up that I could live without my meds anymore. My celiac symptoms began when I started high school and I'm now a college senior. Unfortunately, I'm going through reevaluation because I'm still struggling in school and inter-personally with ADHD symptoms. That being said, there are a lot of other neurological issues that could be contributing. Our brains use the food we eat as precursors for the neurotransmitters in our brain, so if something is causing issues in that way then a change in diet could help. But that's not guaranteed. There's so much we don't understand about all these processes and every kid is different. It has really helped me to have an outlet for all this frustration and also to be informed about what is going on and what medication changes are being made, even when I was really young. Medical tests and procedures can be really scary for children especially if they feel like they're not accepted as being who they are even when everyone around them is trying to help. Just from having been on the other end of this situation, I strongly recommend keeping your son in the loop and in the decision making process. It helps treatments work a lot more effectively because they won't be refused as vehemently and lets the child feel like they're also involved and in control of themselves and their lives.

I got glutened this weekend. I went home for Thanksgiving, and while my parents are amazingly supportive and helpful, something still slipped through. I didn't recognize that it was gluten until the gut sick started yesterday. I thought I was just tired/dehydrated/stressed and all that. I remember from the last couple times I got traces or those couple times I ate something with wheat (oops) it was all over in 3-4 days. But its been 5 and I'm still having trouble eating because all food and food smells are making me nauseous and my gut is still a balloon. This, of course, is not helpful to recovering back to normal but I was wondering if anyone had any suggestions. This has also been the longest stretch I've gone without any CC issues since I had my endoscopy in April so is it possible my reaction is just getting worse because its been so long?

So I was eating some lovely soy chocolate pudding that says "gluten free" on it in 6 languages and in 3 different places, and then I looked at the ingredients and it listed "wheat syrup" and "wheat starch" in the ingredients. And before we get on the "saying gluten free doesn't mean it" rants, I'm in Austria which has very very strict labeling laws. Are these things safe? I'm so confused....

I did three weeks gluten free before doing the challenge for another three weeks and got a positive. But I also had violent reactions when I got diagnosed and my GI said he was almost confident calling the endoscopy positive on sight alone because I had such widespread, visual damage. So it really depends. The recommended time for an endo is 3 weeks on gluten. My guess (keyword: guess) is that since you've been off for 3 months that should be sufficient, but talk to your doctor and keep doing your own research. Maybe someone here has a more medically based answer.

My psych symptoms never quite came in waves like that, but I barely remember the three weeks where I had to do my gluten challenge for my biopsy. Now that I'm gluten free, my head is a lot clearer and I feel like my ADD has gone away for the most part. If you want to get testing done for Celiac, be sure to do it before going gluten free. Just to put that out there.

There is a easy bread recipe you can make, if you're up for it, that is totally egg free. Google "almost no-knead bread." The most basic ones are flour, water, salt, and yeast. You could also try to see if there is a vegan bakery near by or anything like that because they would be egg free. But other than that, pastas work really well too. And then there's soy sauce too. Luckily for you, there are so many things with gluten in them that there have to be some that are also egg free. Go find the list of gluten containing ingredients/foods on this site and just highlight the ones that would work. Good luck with the challenge!

I remember the countdown to my endo... gosh those were the longest days ever. I'm glad to hear you had such a positive experience with your doctor. It really isn't that unpleasant of a test; I don't remember a thing. And then you just get to sleep a lot. Keep us updated with how recovery goes!

Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free.

I have a really bad coping mechanism: I drink a glass or two of wine. Most of my initial symptoms are more psychological in nature (dizziness, tingling limbs, disorientation, etc.) so to keep myself from over-thinking everything that's happening and making it worse by becoming psychosomatically ill (illness without physical causes, based in psychology), I kind of induce the same symptoms through a little bit of alcohol. I also get rid of or away from whatever the culprit was. For the rest of the time until my body decides it's done with the gluten and I need a bathroom ASAP, I try to do things to help alleviate the pain from bloating and keep my anti-spasms on me in case of a colon-spasm attack, which sometimes happens. Also, crappy movies and warm blankets help. It's really about waiting out the storm.

I need to talk to my gastro when I get back stateside about a couple of things, but dairy is definitely out. I had a couple days of just soy and rice milk which were great for the symptoms I thought were for dairy... but I just finished the ice cream I bought earlier in the month and I'm like a balloon. I might go get it checked if it's lactose or casein but this one is going to be the hardest stateside. No more Amy's I have another question as well: Could a high amount of unprocessed foods in stool be a sign of intolerance issues, or just part of your body healing? I'm still new to all this and it's hard to talk to doctors while out of the country.

I'm starting to question if I have other intolerances, temporary or otherwise, in addition to Celiac. But I don't quite know how to figure it out besides elimination which is proving to be very difficult. I think I may be sensitive or intolerant to corn and dairy. For corn, I know in the past I've gotten really bad colon spasms when I eat a corn based pasta, but didn't ever seem to react to eating corn on the cob, popcorn, or anything like that. I did seem to react to Planter's peanuts which use corn starch but that was back when I also had very violent reactions to any CC from gluten right after my diagnosis. I'm currently studying abroad in Vienna where it seems that everything that is gluten free is corn based. I've been eating cornflakes in the morning (whereas at home I eat rice chex) and sandwiches on Schaer bread for lunch. I haven't had a full blown spasm attack yet, but my colon is telling me it's not happy. Sorry if this is a bit too much, but my stool has become very different since I got here. It's more in multiple pieces and round but still easy to pass though the need is urgent when it arises... if that makes sense. I've been here for four weeks so there has definitely been enough time for my diet to be affecting everything. As to dairy, I get really bloated when I have a good amount of dairy but notice everything is fine when I have a soy based alternative. I've switched to soy milk for my cereal and a lactose-free cheese for my sandwiches and it seems to have helped. I could probably get a lactose test when I get home to the states in a couple weeks but I've been considering going dairy free for a while. I just don't know how I would do it at home. The soy here in Austria is non-GMO and while I don't have an issue with modifications themselves, I do have an issue with the business practices behind them so I don't know what I'd use as a replacement state-side. I'm still pretty new to all this so I don't quite know how to handle these questions and self-diagnosis of other things going on. Any input is really helpful. Thanks

The same thing happened to me when I first got diagnosed. It's super annoying, but a good way to identify how you are coping with it 'below the surface.' Mine were about eating pretzels, pizza, cookies, and ice cream cones.

Check out the blog Gluten Free Girl and the Chef. Shauna, the author, has an AMAZING upbeat attitude about life with Celiac. Whenever I hit a rough spot, I go read her blog. It's also full of good recipes. As for good recovery stories... I'm doing pretty well with mine. I started this whole process in February where I had just accepted I was going to be sick and never fully grow out of my ADD. Then I finally got tested. Ever since I started going gluten free after my endoscopy, I am such a happier person. I can remember things more easily, my anxiety and insecurity has almost disappeared, I don't have to use my ADD meds any more and I feel great. One of my favorite things about Celiac is that we don't need medication or anything like that. We can heal ourselves just by eating all these amazing foods that most people are never exposed to. My best advice for helping this process be more "rainbows and butterflies" is to keep an open mind and positive attitude about what you're going through. And allow yourself to feel everything. By that I mean don't try to shut down the sadness or frustration when you can't eat something you used to love. It helps it not boil up into resentment. I also tell people not to pity me when they find out that I can't eat XYZ. Finding out I have Celiac changed my life in a really positive way. Hope that helps and makes sense

Today my roommate and I went to the grocery store after a couple hours of walking around a museum so we were both shopping hungry. Everything I picked up had the coveted Austrian "gluteinfrei" symbol on it, until I got to the chips. I found one brand that based off the ingredients seemed safe, but then I found "Wild Tex Chili Chips" that looked delicious. A quick look over the ingredients yielded no warnings, the allergy listings didn't say anything about wheat or gluten, so I bought them. It wasn't until I was eating them in the elevator in my apartment building that I noticed the "wheat flour" in the English translation of the ingredients. I forgot that the allergin listings here don't include things that you can easily read in the ingredients, it's just traces that are listed. In my hungry state I didn't read the ingredients multiple times over, in every language I understand, until it was too late. I'm almost convinced that I shouldn't buy anything without that wonderful, government regulated, less than 20ppm label. Has this ever happened to anyone else? Also, my short term coping method is a glass or two of wine because my initial reaction looks more like intoxication than anything else, and I'm really scared of mentally causing my reaction to become worse. So I have a drink, then I can't tell if it's the alcohol or the gluten that's making my head woosy and the world spin, and since I can't identify the source of my off-ness I feel like I won't accidentally psychologically make a mountain out of a mole-hill. But at the same time, I feel like this isn't a good coping mechanism. I never knowingly eat something with gluten and avoid CC at all costs, but when it does happen and I find out soon after, I get rid of the gluten food and triple check everything else in my kitchen. Any other ideas on not psyching myself out?

Make sure you've replaced all the things that need to be replaced in your kitchen. For the most part, anything that is metal (not cast iron), silicon, or ceramic should be safe unless it has lots of cracks, scratches, or hard to clean nooks. Anything that is wood, natural bristles (basters), scratched plastic, or seasoned (cast iron, some cookie sheets, baking tins etc) needs to be replaced. These are easy places to get continually cross contaminated. Also check any medications that you take. It seems to be rare but they can have wheat starch as a binder. You might just still be clearing things out of your system, you might have withdrawal symptoms (yes that's a thing), or you might be showing signs of other intolerances that can be temporary until you heal or just new adaptations. Keep us updated on how you're feeling! PS Also, for visiting places, aluminum foil will be your best friend. You can create a "safe space" pretty much anywhere with that stuff.