Should I Bother To Get "diagnosed"?

[piercesdesigns]

Hi. I am new. I have had a lifetime of intestinal problems, coupled with narcolepsy. Then in 8/07 I moved into a home that was infested with toxic black mold and my system came crashing down completely. My face would swell so much my lips would crack open and bleed, I couldn't breathe, my body hurt from my head to the soles of my feet, I had brain fog.

I went from specialist to specialist. No one really "tested" me for anything but they did give me all kinds of drugs. Steroids, inhalers, PPI's etc. None of those made a lick of difference. My ferritin levels were down to 5. My cholesterol was up to 290. Finally, after 2 yrs I saw an Integrative doctor who put me on a Candida diet. No carbs, no sugar, no dairy. Within 3 months all of my symptoms are gone and my cholesterol is down from 290 to 200 and I can breathe.

I began to notice that if I ate products with gluten, I immediately could not breathe and I was exhausted. Then about a week ago, I was making pasta for the kids and rice noodles for me. I used the same spoon to stir both. I realized it halfway through preparing the meal and said "I'll go ahead and eat and if I can't breathe afterward that pretty much seals it." And, you bet, within minutes it felt like I was breathing through a straw, and that continued for 2 days.

So, should I even bother getting an official diagnosis, or should I just declare myself celiac and be done with it? There is no treatment for this, so I guess what is the point.

My biggest struggle is I am dangerously thin. I am a strict vegetarian and lactose intolerant to boot. I struggle to stay at a BMI of 17. I have had some nice rude people tell me if I won't eat meat then I deserve to be sick. My religion prohibits meat and I have been a vegetarian for 24 yrs. I can't imagine putting dead flesh in my mouth. Am I going to suffer malnutrition?

I feel very overwhelmed by the prospect of my life being this way forever, but each day I get a little more accepting.

[Crimson]

You obviously have quite an issue with gluten. Given that your reaction is so immediate, it's probably something that would show up on an allergy test. Maybe a good allergist. If you're going for some kind of diagnosis.

I'm coming to the conclusion that gluten intolerance is the same no matter what the diagnostic is.

As for the dietary concerns that you have...

Protein www.trueprotein.com has non GMO rice and pea protein that works quite well for me. Make supplemental shakes, add it to foods, use it in place of some flours for baking too. I get the plain with no sweetener. It's much more useful that way.

Protein is so important for vegetarians.

Beans and rice together help to make a whole protein as well.

You may want to consider adding higher calorie foods such as coconut oil and flour, almond flour * you can make your own with blanched almonds and a coffee grinder* to help you put on a bit of weight. I eat a fairly high fat *healthy fats such as coconut oil, walnut oil, some olive and almond oils, also plenty of whole almonds, almond butter, flour and so on*

Basically, if you chose to be vegetarian, you need to educate yourself a bit on dietary needs and how to supplement them.

I know there are websites that can give you far more information than I can.

Feel better!

[Wolicki]

Hi. I am new. I have had a lifetime of intestinal problems, coupled with narcolepsy. Then in 8/07 I moved into a home that was infested with toxic black mold and my system came crashing down completely. My face would swell so much my lips would crack open and bleed, I couldn't breathe, my body hurt from my head to the soles of my feet, I had brain fog.

I went from specialist to specialist. No one really "tested" me for anything but they did give me all kinds of drugs. Steroids, inhalers, PPI's etc. None of those made a lick of difference. My ferritin levels were down to 5. My cholesterol was up to 290. Finally, after 2 yrs I saw an Integrative doctor who put me on a Candida diet. No carbs, no sugar, no dairy. Within 3 months all of my symptoms are gone and my cholesterol is down from 290 to 200 and I can breathe.

I began to notice that if I ate products with gluten, I immediately could not breathe and I was exhausted. Then about a week ago, I was making pasta for the kids and rice noodles for me. I used the same spoon to stir both. I realized it halfway through preparing the meal and said "I'll go ahead and eat and if I can't breathe afterward that pretty much seals it." And, you bet, within minutes it felt like I was breathing through a straw, and that continued for 2 days.

So, should I even bother getting an official diagnosis, or should I just declare myself celiac and be done with it? There is no treatment for this, so I guess what is the point.

My biggest struggle is I am dangerously thin. I am a strict vegetarian and lactose intolerant to boot. I struggle to stay at a BMI of 17. I have had some nice rude people tell me if I won't eat meat then I deserve to be sick. My religion prohibits meat and I have been a vegetarian for 24 yrs. I can't imagine putting dead flesh in my mouth. Am I going to suffer malnutrition?

I feel very overwhelmed by the prospect of my life being this way forever, but each day I get a little more accepting.

Well, it looks like you have your dx already. Celiac or gluten sensitive, either way looks like gluten-free is the way to go for you. Maybe run the blood panel, since it's non-invasive, but there are lots of false negatives with the blood tests.

I have been in your shoes. I ate and ate trying to gain weight. Strangers would stop me on the street and tell me I needed to get help for my "eating disorder." I wanted to smack them. At 6' and 97 pounds, I was finally diagnosed. In three months gluten-free, I have gained a startling 60 pounds, and that is with lots of exercise and no more than 1800 calories per day. Your body holds onto everything when you have been malnourished for a long period of time. Also just found out I am hypothyroid, so hopefully with meds the weight gain will stop, because I look good at this weight.

As far as your diet goes, I say eat nots of nuts, nut butters and avocadoes. If you have a good size spoon full of peanut butter (like a heaping cereal spoon) that 's like 400 calories! Once you're off gluten and add in some high quality fats, you will gain, unless there is an additional metabolic disorder. But your intestines have to heal in order to absorb what you are eating. Pre gluten-free, I was eating 4000+ calories a day and losing!

Hang tight. You'll get there!

[Lisa16]

Wowie-- that is quite a rection you get there.

My first thought is that since it is respiratory (and therefore potentially life threatening) I would go to a doctor about that aspect of it (and not for a celiac diagnosis) for a couple of reasons.

First of all, you have it documented so that if you are, say, walking through a grocery store and you breathe in some flour and then collapse when your airways close up, they will know what is wrong. It sounds almost like an anaphalactic reaction and they might be able to do something for that, like an epipen. Doctors (correctly or not) will probably consider this aspect of it an allergy, rather than celiac. Oddly enough, if you approach it as a wheat allergy and tell the doctor (see an allergist, I think) what happened, you are more likely to get a diagnosis than by approaching them about celiac directly.

Secondly, you will have some way to legally protect yourself in situations where you come into contact with gluten/ wheat. In that vein, you may want to consider a strictly gluten free kitchen. Your reaction is severe enough to warrant that. People with peanut allergies do not generally keep peanut butter in their kitchens for others to use.

You may be celiac as well as allergic. If it were me, I would not even bother with a celiac diagnosis in this case because you obviously cannot deal with gluten anyway. The end result is going to be the same. A secondary celiac diagnosis won't make a big difference in your case because the respiratory reaction trumps it (because it is potentially life threatening, whereas celiac is still not so considered by most doctors.)

Just my two cents. I wish you luck!

[piercesdesigns]

The frustrating thing for me is that I have seen two allergists. In 8/07 when I was unrecognizable from a face and lips that were 2-3 times their normal size (this was after moving into the mold house) I had the back punch test done. I tested 3-4++ positive to almost everything, including nuts. According to the allergist that qualified me as "A Highly Allergic Person" gave me an epipen and told me to avoid the things that I was allergic to. (Everything on the planet!) I kept telling them about the mold and they all waved it off. When we found the mold and eradicated it, I went back in for another allergy test about 6 months later and I was allergic to NO foods, but still off the charts on mold *shock*. Still they refused to link to the mold. And I was still having instant respiratory issues within minutes of eating (I was definitely NOT gluten free). I could not figure out for the life of me what it was. They kept telling my to take steroids and inhalors, even though they did nothing for the breathing.

A GI specialist never even examined me. He talked to me and told me it was allergies. Finally a pulmonologist diagnosed GERD. OK, took PPI's which seemed to mask the issue for awhile. Then when my ferritin levels got to 5, they tested my cholesterol at the same time and FREAKED at the 290 number because I did not fit the profile for someone to have that kind of cholesterol. So they put me on Crestor. Within one week I was unable to work because I was a walking Alzheimer patient (at 42). I couldn't remember how to drive, or even how to get to work, I couldn't breathe, I was swelling again. They missed the connection and kept me on the statin for 3 more weeks until I ended up in the ER having blackouts,etc. One day off the statin and BOOM, I was normal. Turns out, statin is derived from MOLD. My body was destructing from the inside out trying to get rid of it. That was when I found the Doc who put me on the elimination diet.

That was in May. So, I was gluten free for 3 months, then began adding things back in. I was still not able to pinpoint WHAT was causing the inability to breathe normally sometimes after eating when things got added in. Then I started really looking at gluten sensitivity and *CLICK* the connection got made. And I guess my "experiment" with the pasta last week really solidified it.

So my point of this rambling post is that no allergist seems to be willing to accept that you have such a severe allergy to something like wheat or mold because it is not something they see, ever. Peanuts? Yes. That they can believe. This other stuff? Nope.

Which came first the life threatening mold allergy or the gluten? Who knows, but I do believe they are tied. But I am trying to come to terms with my life as it is and will be. I think the thing I struggle with most is being too busy to prepare things and then just going hungry. The answer to everyone is just to have a salad with nothing on it, no dressing, etc. Well, that makes my stomach hurt really bad for hours. I imagine I have a ton of intestinal damage at this point. Steamed veggies are great, but finding those on the go with 2 teens is nearly impossible.

I'd really love an appointment with a nutritionist, but insurance says No. I would imagine a nutritionist would throw up their hands anyway. Celiac, vegetarian, sugar free, lactose intolerant. Riiighhhtt LOL

[JillianLindsay]

Hello and welcome,

I don't know where you're from or if anyone has already mentioned this, but here in Canada you can get a tax break on those expensive gluten-free alternative foods if you have an official dx. Some countries have other programs in place that financially aid people with severe dietary restrictions, but they require a DR's note -- something to keep in mind

Also, are you taking iron supplements? Meat is a big source of iron, however it is extremely insensitive and insulting for someone to suggest or insist that you eat meat if it is against your religion. As I'm sure you are well aware, there are other excellent meat-free sources of iron (i.e. spinach). You could find a DR or nutritionist who is sensitive and respectful of your religious beliefs and is willing to work with you to develop a diet rich in iron and absent of meat, gluten, lactose, and sugar... if they're good at what they do, they'll welcome the challenge

Good luck,

Jillian