I'm Really Afraid...

[GlutenFreeAustinite]

Hi all,

I've been gluten-free for roughly 18 months to treat constant migraines and sporadic gastritis. The diet has been greatly successful, and I manage it well, for the most part. I take more risks--eating things out of non-designated fryers, eating "safe" non-certified foods, etc--but no noticeable issue from that.

Yet, I test myself, because every so often, I start to believe that I've made all of this up. I've glutened myself a few times in the past few months, and each time, my symptoms have changed.

First time, ate a quarter slice of wheat bread, got a stomachache and headache that lasted 2-3 days. D/C alternating.

Second time, ate almost a whole slice of sprouted wheat bread that someone told me was gluten-free. Immediate sinus drainage, sore throat/stomachache that lasted 2-3 days. D/C alternating.

Third time, ate a mini Milky Way, which apparently has barley in it (this one was completely unintentional). D almost immediately, general stomachache that lasted a couple of days.

Fourth time, I ate 2 spoonfuls of mustard that contained wheat flour. Stomachache almost immediately, woke up with a worse stomachache, had a migraine by the end of the day. D/C alternating, had intense brain fog on the 4th day, was better by the 5th, though exercise and eating food seemed to exacerbate.

Fifth time (right on the heels of the 4th), I drank a small glass of scotch, which gave me a stomachache that lasted 2 days.

My grandmother had a bunch of diseases that are related to celiac. But she tested negative, so family history's not especially helpful.

I know it's ridiculous that I think I've made this stuff up, but I do. My mom wants me to get tested, and so that means I will probably have to go back on gluten. Yet, I'm terrified I'll go through all the nastiness of gluten and test negative, at which point I don't know what I'll do. Any suggestions?

[Takala]

Craving more gluten is a sign of being cross- contaminated.

I've seen LOTS of people on here who will do this, then invent some excuse like "oh, I really must prove this reaction to gluten from a medical diagnostician's standpoint" and they then proceed to make themselves sick again. A lot of times it's also they are using the excuse "my (fill in the blank) doubts me, so this will prove it."

So let's look at this from a logical standpoint.

If the test(s) are negative, you will still be getting sick from eating gluten, because test status does not really affect your auto immunity or intolerance.

"...at this point, I don't know what I'll do."

Uhm, why not ? Isn't just stopping eating something which makes you sick the logical thing to do, or are you powerless over your own existence ?

_____

edited to add missing "/" .... again

[Skylark]

I know it's ridiculous that I think I've made this stuff up, but I do. My mom wants me to get tested, and so that means I will probably have to go back on gluten. Yet, I'm terrified I'll go through all the nastiness of gluten and test negative, at which point I don't know what I'll do. Any suggestions?

I suspect a week or two into your challenge you'll have a really solid idea of whether it's in your head. By the end of a solid three-month challenge I bet you can't wait to be rid of the stuff, positive test or not. On the other hand, what if you challenge, there is not much reaction and the test comes back negative?

Really this is a win-win situation. You get a solid chance to evaluate your reaction to gluten and if you feel sick, you can reaffirm your decision. If you feel OK and test negative, you get beer and pizza again!

[GlutenFreeAustinite]

Perhaps I should clarify my earlier post. I know I have a problem with gluten. I've gotten sick enough times this semester that I don't really doubt that any more. Thing is, I will be going off to college next fall, and I've seen my best friend, who also is gluten intolerant and in her junior year of college, struggle with food until she was allowed to live off campus. I know there are laws (ADA, Students with Disabilities) stating that colleges have to work with a disabled student (which includes celiac/food allergies now), but I don't know if they will do so if I don't have an official diagnosis . I was at a college overnight during the summer, and the school was less than serious about helping me during my stay on campus--no one told the kitchen that there would be a kid with gluten/soy problems. And several of my colleges require medical notices for any special accommodations. I don't think I'm powerless over my own existence; I can eat how I please. My concern is that my school of choice will be less than helpful because I'm not officially diagnosed.

[Skylark]

Oh, wow. I misunderstood. You are in a difficult situation. You might be flattered to know that you write so well that I assumed you were an adult!

I think you are correct that you need an official diagnosis for ADA accommodations. I think I would be inclined to eat gluten and try for the positive test. A full gluten challenge is three months. Some doctors will test once you become symptomatic in case you develop antibodies sooner and can cut the challenge short.

I think you need to plan for the chance of a negative test too, given your grandmother's history. Some colleges allow a small refrigerator, microwave, and hotplate in the dorms. Others allow freshmen to live off-campus, which would probably be the best situation. I'd say you pretty much need one or the other.

Cooking in a dorm room is doable, but kind of a pain to wash things afterwards if the bathroom is down the hall. I found it easiest to stick to cold food and paper plates. I wasn't gluten-free in college (sigh...wish I had known the source of the stomach-aches) but the dorm food was awful so I had a little refrigerator with bread, lunch meat, cheese, fruit, ramen, crackers and peanut butter in my dorm room in self-defense. We all did. All I had was a heating coil to boil water for instant soup, but I still ate a fair number of meals in my room in preference to breaded mystery cutlets or an amorphous blob optimistically labeled chili relleno. Nowadays you can get a little microwave and have a lot more flexibility.

Meal plans are often flexible nowadays so you might be able to buy some meals and cook others. You're not that sensitive to CC if you can eat from shared fryers (lucky you!) so it's going to be a lot easier. The campus where I work has eggs and sausage or bacon in the dorm cafeterias at breakfast, and reasonable lunch choices with a big salad bar, yogurt, and fresh fruit. There are also two fast-food Mexican places and a sushi bar on campus that have gluten-free choices. Getting a filling dinner consistently would be harder, and that's when you'd want to be able to cook in the dorm. Visit the cafeterias when you visit the campuses, and make note of what's served!

[GlutenFreeAustinite]

Hahaha. You are too kind.

But I apologize if I sounded whiny or anything....it's just that I do feel stuck between a rock and a hard place. I know I will need to be gluten-free, so I will do that if all else fails. And I am hoping that if celiac comes back negative, my dr will write it down as non-celiac so I can still qualify for ADA.

Grandmother's history is interesting....had Crohns, questionable fibromyalgia. She was tested back in the 1990s when no one knew much about celiac and testing was not as good.

My best friend said that she spoke directly to the college and told them to either give her food or let her opt out of the meal plan. She did get food that year so I am hopeful, but the diagnosis would make things a lot easier. Most of the places I have been either have a fridge or let students bring one. But we will see.

Thank you for your help. I really do think I have celiac--not reacting to CC seems odd but I could just not be reactive as much as others. But thank you!

[ravenwoodglass]

Had your doctor been seeing you for your gluten related issues? If so those celiac related problems will be in your record. You could try talking to your doctor, let him know (if he/she doesn't know already) how much better you are doing gluten free. Tell the doctor in vivid, spare no details what your reactions are to gluten and you are scared to death to do a full challenge because of your reactions. Also tell him that you understand your testing can't be done if you don't do the challenge. Some doctors will give you a diagnosis based on resolution of past problems on the diet and the reaction to accidental gluten injestion. Your doctor may not be one of those but it doesn't hurt to ask (beg ) since you will need something on paper to get accomodations at school.

And don't worry about being whiney, for one thing I don't think you were, but this is a safe place to whine or vent as much as you need to. Your in a tough situation. You're certainly not going to be able to easily achieve as much as you could if you are being glutened frequently at school. I hope things turn out well for you.

You might also want to make a topic asking if people know of Celiac freindly schools. Some are great at helping us. My DD went to Northeastern and they put her in a single room in senior housing so she could have her own kitchette. Some schools will allow a small frig and hot plate and microwave in the dorm room. Some are of no help at all.

[GlutenFreeAustinite]

I have been seeing an allergist for about six months, but our insurance changed and I don't think I can go back to her. Not to mention that she reaaaalllly didn't think I had "celiac" and was very resistant to testing me for food allergies, let alone celiac. So I'm planning to go back to my GP and talk to her and see what I should do. I'll beg for a diagnosis.

Thanks for the support. I'm really trying to be positive and not become crazy-paranoid, because that's a bad idea, but I do want to figure stuff out.

And I'll definitely do that, ravenwoodglass. that's a great idea.

[Skylark]

You know, it is possible that your symptoms could be caused by allergy and delayed hypersensitivity. You get sinus problems and your first reaction to wheat is pretty fast. There is some research that migraines can be caused by delayed hypersensitivity reactions - the mechanism is IgG allergies. GI trouble can also be allergy. Your GP may be able to order IgE and IgG allergy tests for wheat and if you come back allergic, you're home free. You can get ADA accommodations for an allergy, right?

[GlutenFreeAustinite]

Yeah, that's entirely possible. Part of the reason I need to change allergists is because my current one did not want to run a food panel scratch test. I know there are other tests, so that might be an option too. I do react fairly quickly to wheat--that is the one I most commonly ingest. My household doesn't often eat barley or rye anyway, and I've only eaten once in the past couple of months (Milky Way bar).

I also tested positive for a soy allergy, so if I can get a doctor to sign off on that, I should already get accommodations, because food allergies are now covered.

[researchmomma]

My daughter is probably non-celiac gluten intolerant. I have been going bonkers trying to find a doctor that BELIEVEs in that in my city because of exactly what you are going through. She is gluten-free and we have seen huge improvements.

I actually found a GI/internal Med doc that got fed up with insurance companies so he went back and got a homeopathic license so he could spend more time with his patients. He fully believes and supports Non-Celiac Gluten Intolerance. If you want, PM me and maybe I can ask his office for a reference in your city?

I also think the allergy route is a really good one!

It is so upsetting to me to hear your story because if something makes you physically ill, you shouldn't ingest it. Why must we/you PROVE by diagnosis that we can't have it to get colleges/universities to provide foods that all students can eat. When I was in college (ahem, 20 years plus ago), the big thing was vegetarian food. They had it. I bet you 10 years from now, most schools will have a gluten free option. I hope so.

Good luck and let me know if you want me to contact my doctor's office.

[GlutenFreeAustinite]

Thank you, researchmomma! I just did.

I did exactly what you did with your daughter. I went to a pediatric neurologist and he (along with my current allergist) said not to eat anything that made my headaches worse. Turns out gluten did that, and for a while we thought milk did too, but I can eat that now with no effect.

I'm definitely going to try the allergy route!

It's frustrating. A lot of places actually do have gluten-free stuff, but the college it seems likely I'll end up at did not have a ton of friendly options on campus. To their credit, they did have rice bread, and I'm pretty sure they'd be more helpful for an actual student instead of just a visiting kid, but I'd really like to not have to eat gluten for a month so I can get tested and hopefully diagnosed. I'lll be going to my GP soon and hopefully getting a starting point there.