AzizaRivers

Assuming it's not (environmental) allergies, chances are you're being glutened by something. Could it be CC (from your pots and pans, from other food in your home)? Have you recently started buying a new packaged food that you hadn't had before since going gluten free, that might not be as gluten-free as it says it is?

It COULD be another intolerance or a food allergy, but that is not the most common manifestation, and since it was one of your gluten symptoms, I would guess it's from gluten. Canker sores are a common gluten thing (I have 5 right now, have to figure out what I'm eating wrong), and it might be canker sores in your throat that is the "sore throat" you used to get and are getting now.

I wasn't diagnosed until after middle school but I used to have a celiac friend when I was that age (7th grade) who had a doctor's note (can be done with a 504) that she was to take a different class during the term in which she was assigned to cooking.

This is tricky. You want him to be able to participate and learn, but sometimes it just isn't safe. To be honest, in 7th grade they're probably not going to do a whole lot of playing with flour and things. Some days, but not all. When I was in 7th grade we made pinwheel toast (bread), orange julius (gluten-free), pita pizzas (bread), stir fry (gluten-free), fruit smoothies (gluten-free), and snicker doodles (the one time we used flour). If his curriculum looks similar, perhaps you could send him his own ingredients on the days when they're making something gluteny (like send corn tortillas to use as a crust on pita pizza day, for example). On floury days he could be excused.

This only works if you trust him to be able to clean a space for himself on the counter top, and if he will be able to put his pizza (or whatever) on aluminum foil instead of their pan, etc. So that is a possibility. You should talk in depth with your son to find out what he wants to try to do, with whoever takes care of accommodations at school, and with the teacher himself/herself. That is the only way you will know what they are scheduled to make during the term and if it would be safe for him to be there at all.

Personally, I can't stand the ease of anything with bean flour in it, which I why I don't use most of Bob's mixes. I'm almost sure that was the source of your problem. I don't use sorghum very often, but the times I have used it, I didn't notice anything in particular about the flavor of it.

Cider vinegar helps things rise, in my experience, which could be why your first loaf was such a good riser.

Crumbling in bread is something I have been trying to fix for a long time. I have a recipe that's awesome for taste and rise, but it crumbles and is so fragile, as well as a little mealy once it's been around for a few days. It could never be used as a sandwich, and it's heavenly straight out of the oven but I don't care for it as much once it's a day old.

SO: If I were you, I'd keep the cider vinegar and your eggs/oil/yeast etc. combo, and ditch that flour blend. If you want to go for mixes rather than handmade blends (I have a bunch of flours on hand rather than mixes), go for the King Arthur mix instead of Bob in the first recipe.

And please tell us how to turns out!

Compare it to a peanut allergy. That's the only way to get certain people to take it seriously because it's something they're familiar with. "It doesn't matter whether or not he swallows anything, a minuscule amount of contact to his mouth will cause a serious reaction. It's similar to the sensitivity of someone with a peanut allergy, he cannot put anything near his mouth without being sure the ingredients are safe."

As far as I know, wherever you take him, you have the right to ask to see the containers, bottles, etc. or anything so you can make sure it's safe. If they won't let you see, you go somewhere else.

As far as actual ingredients, I don't know. I doubt the presence of gluten in them, but we all know better than to assume.

I've had it. Didn't have any problems with it (their ice cream makes me very sick for some reason, but not the milk). My only complaint is that it just tasted like water, thick white water. I had the plain flavor, and I believe it was unsweetened. Perhaps that's normal for coconut milk, I have no idea. But I was expecting a lovely mild coconut flavor, and it was like thick water.

I can see that you're at your wit's end about this. I don't have any advice--frustration with my university's lack of knowledge or accommodation was one of the reasons I resorted to living at home after the first 2 years. I just wanted to say that I've been there, and it sucks. It's hard to go too far away because then you've got travel costs during breaks, and it makes your head explode when schools simply WON'T do what they would be able to do if they were willing.

What you are doing is very dangerous.

Sometimes, people who have been gluten free for a long time begin to eat gluten again and have no visible symptoms. It's called a "honeymoon period" by many of us around here, and it's deceiving. Additionally, some people don't have any visible symptoms at all. I know girl in her 20s who was diagnosed as a baby because of failure to thrive and nothing else (blood test, scope) and to this day, she has no idea when she has accidentally ingested gluten because she doesn't get symptoms.

However, symptoms or no symptoms, you are doing actual damage to your intestines by continuing to eat gluten. You may not feel it now, but you are risking all kinds of complications including secondary autoimmune disease, organ damage, and various types of cancer.

I highly encourage you to quit what you're doing and go completely gluten-free again, with no cheating whatsoever because if you have been doing this for several years, it's likely you have a lot of damage that needs to heal.

I don't know what your relationship with your parents is (since I can't imagine them letting you eat like that unless they are severely misinformed as well) but consider asking them what your diagnosis was like?

I'm sorry you're having a hard time. Super-sensitivity seems increasingly common. A few questions: do the people you live with, family, roommates, etc. understand the risk of contamination for you? It's helpful if others understand how careful you need to be. Are you using things like wooden spoons and cutting boards, old skillets, cookie sheets? Those can be contaminated with gluten. Are you sharing butter, jam, peanut butter, other condiments? Those can get you too if someone double dipped their knife after buttering toast.

I live in a mixed household so this is all stuff I have to deal with too. I have my own peanut butter. I do share jam but everyone thoroughly understands to use a spoon to scoop it out onto the bread and then spread with their knife. Things like that.

My partner knows he can't kiss me until it's been an hour and a full glass of water after eating gluten. That's good enough that it doesn't get me sick.

Things that DO still get me are situations like babysitting: six gluten-eating kids who constantly make messes I need to clean up, feeding the baby crackers, cleaning him up, preparing their food, stuff like that. Maybe you don't babysit but do you have anything like that? A friend's kids maybe?

Someone who is celiac or gluten-intolerant should NEVER cheat. Never. Never ever. You should be aware that each time you cheat you're doing physical damage to your intestinal lining and raising your risk of developing serious complications later in life, including a few types of cancers.

Your family should understand this too, and as the above posters have said, your father especially should not allow you to do that.

Also, what's so embarrassing about your food being gluten-free? I don't really get it. Just order the gluten-free food, it's not a big deal, I promise. You're going to dinner to socialize with family, no one should be so hyper focused on what your food is called that it matters you order something gluten-free.

Chinese herbal medicine successfully uses the tongue to diagnose a lot of potential conditions of the body, based on the color, coating, etc. Not everything, obviously. But you're certainly right about the tongue often being an indicator of certain things happening in your body.

I wouldn't be surprised if your occasional yellow tongue is a symptom of CC. Are your other symptoms extremely sensitive? Would you know if you had gotten trace amounts somewhere?

I vote "Celiac Disease - severe reaction to wheat, rye, barley traces." Or something similar. Would that fit? Hmm.

Having it as an allergy might be confusing because people often expect that a food allergy severe enough to warrant a medical bracelet would require an epipen, which I'm guessing your son doesn't have, or if he does it's for a different allergy and not for gluten. You wouldn't want people being misled if they realized he'd had gluten.

Do you mean that the chlorophyll tablet had gluten somewhere in it? If your rash was DH, there's not much to do but wait for it to go away.

For the burn, try lavender oil. It's one of the few essential oils that's safe to apply directly to your skin and works wonders on burns.

Keep in mind that it can be difficult to test for intolerances (vs. allergies which might be diagnosed by skin or blood tests). Your problems with nightshades are more likely intolerances, as would be corn if that turns out to be an issue too (I'm assuming your corn bread was definitely gluten-free and did not have any wheat in it?). Corn was difficult for me to digest for the first few months on the diet, but I was able to add it back in after a little while as it wasn't really the corn itself, but the fact that I needed to give my intestines easy foods.

A few other things to think about...

Are you sure that your diet is truly gluten-free? That you're watching out for tricky names for gluten, and have replaced any contaminated cookware, cutting boards, stuff like that?

Also keep in mind that if you never removed dairy from your diet when you first went gluten-free, that could be an issue as newly diagnosed celiacs are often lactose intolerant until healed. Soy is another common culprit to which celiac often develop intolerances.

In the mean time, you could try keeping a food diary by keeping log of everything you eat, along with an elimination diet and adding back in foods one at a time to keep track of what bothers you.

I'd say so for sure. And if they refuse, you need a new doctor. The above poster had the right idea by bringing it up as a search for other possible causes of your symptoms, since they really should want to do that if they haven't found anything from your blood tests. My blood test was negative also, and like you I hadn't eaten much of anything--in my case, I'd been eating almost nothing but applesauce for about a month before my test.

Hi Jordan. First of all...I'm sorry you're feeling so sick. It really sucks, I know.

Many people experience a kind of "gluten withdrawal." I think this is especially common in people who were asymptomatic like yourself. If that's what it is, you just need to stick to the diet and it will go away.

Also, new celiacs are often lactose intolerant because of intestinal damage. Try cutting dairy out of your diet and see if that helps.

Have you explained all of this to your doctor? I'm sorry you're having such a hard time with the diet. Please try to stick to it despite that--in the long run, you will only keep building up damage if you continue to eat gluten.

Jarrow Formulas makes an allergen-free probiotic. They're well-trusted and high-quality. Fairly common so shouldn't be hard to find.

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You're probably familiar with the debate on the gluten-free status of oats.

1. They are very often grown with and processed with wheat products, making them usually cross-contaminated unless they are certified gluten-free.

2. The protein in oats is very similar to gluten, so many celiacs are not able to tolerate even certified gluten-free ones (including myself).

Also, there's debate as to whether gluten can be absorbed through the skin, but either way, if it's on your hands you're likely to get it in your mouth. Also, many of us do have skin reactions at the same time doctors are saying it can't happen. I wouldn't use sunscreen with oat kernel extract in it. Unless they're using certified oats (highly doubtful) you should consider it unsafe.

So my partner and I really love making jam and canning things, and because of all of the wineberries in our yard and fields, we've found ourselves with 10 jars of jam (and it's not even peach or blackberry season yet!). He has it on toast or bagels every morning, and I really want to have some but I've only had a little so far because I don't have bread or crackers to put it on. I do occasionally have bread but I don't like to eat it very often, and I refuse to shell out 6 dollars for a small box of mediocre crackers.

I've stirred some into vanilla yogurt, and that's as creative as I've been able to get. Not a huge fan of rice cakes. So I'm looking for suggestions. If you had as many jars of jam as we do (maybe you do, too!), and no bread, crackers or other gluteny friends, how would you eat it?

I second the above, as well as agreeing that it would be a good idea to be tested for thyroid issues and anemia (as well as having them rub a full blood panel while they're at it to check for other vitamin deficiencies common--but not guaranteed--in celiacs).

If your celiac tests are negative and other possible causes come back normal, since you're willing (good thing) I'd say give the gluten free diet a very strict try along with the elimination of dairy, oats (many celiacs can't even have certified gluten-free ones, I can't) and possibly soy (not as good for you as they say, anyway). That also means being aware of the potential for cross-contamination (lots of info on here about that) and avoiding eating out if you can for the time being. If you see no improvement in maybe 8 weeks, then you could think about another possible cause. But honestly, your symptoms are classic celiac and the blood tests are not very reliable. Plenty of us test negative, myself included. If you figure out that it's gluten hurting you, stay on the diet for good. Humans have, in the past several hundred years, forgotten how to listen to our bodies. We shouldn't need a piece of paper to tell us not to eat gluten if we know it makes us sick.

Yup, that's likely a glutening. I doubt it was the vanilla--I've never heard of vanilla extract with a gluten ingredient. It was probably unsafe kitchen tools (a scratched pan with gluten baked in, a wooden spoon, etc.) or possibly someone had been using flour or something in the kitchen in the hours or days before and it wasn't cleaned up all the way.

Yup, it happens. Welcome to the world of celiac.

For several years before I was diagnosed, I had a constant yeast infection that could not be cured by anything, prescription or homeopathic, no matter what I did. I suspect I had intestinal candida that was preventing me from curing it. The week I went gluten-free, it disappeared. I had a weird diagnosis, so whenever I doubt it I just remind myself of that. Whenever I get a firm glutening (thankfully not often) it comes back.

My menstrual symptoms, which had been just bad cramps, got worse and worse and suddenly were causing me to vomit predictably on my first day. That went on for a year, and by that time the one day had begun to spread to the first four days, and then before I knew it I was sick every day, period or not, and couldn't keep any food down. The mornings were worst and I would feel better towards the end of the day, and then later it went to all-day nausea and vomiting as well as malabsorption D. Waited two weeks, went to the doctor who sent me for a hundred tests. By this time I weighed about 80 pounds (I'm 5' 2"). Ended up having negative celiac bloodwork (hmm, hadn't eaten anything but applesauce in the month beforehand). I had the genetic tests done (they only test for DQ2 and DQ8) and was told those were negative. At this point my gastro told me to go gluten-free and see what happened, even though I had yet to have my biopsy. He was feeling like I couldn't afford to lose any more weight during the few weeks we had to wait to get a biopsy. I started to improve slightly, and then when I had my endo it was inconclusive. Over the next 6 weeks I continued to improve and gain weight and my gastro decided to diagnose me based on all that. He seemed to believe that I had healing damage in my gut.

So from the time I first started to show symptoms to my final diagnosis was about 14 months, and I was only super-sick for 2 or 3 of those.

Wipe it down with soap and water. 409 and vinegar and stuff aren't really necessary as you can't "kill" gluten, you just have to do a good job wiping it away. You can hit it with 409 but if you haven't done a good job wiping it's still there. Just wipe stuff down often. Avoid having it around in the first place as much as possible.

I heard from a celiac friend the other day that Peace A Pizza makes gluten-free now. He said they put it in a separate oven and have a separate set of equipment to prepare it with. All second-hand info, have not seen or asked myself. He said it's not on the menu yet and not at all locations. Apparently it was pretty good.

Anybody tried it? Heard anything?