Another Newbie

[clover]

Hello.

I was just diagnosed with celiac disease two weeks ago after years of stomach problems, and other symptoms which I am only now learning ARE symptoms. I guess I thought that somehow I was experiencing stomach pain, fatigue, memory loss, weight loss, mild depression, and etc. ALL because I wasn't being good to myself. I tried to talk to therapists & doctors, all who kind of looked at me funny & did their best to try me out on diets & pills. I've believed that I was hypoglycemic, pre-diabetic, just plain anxious & paranoid, and that I had IBS, of course. I was prescribed all kinds of medicine for ulcers, gas, "motility", and finally I was given anti-depressants. Yick. After two weeks, I refused to take them any more, and seemingly as a little inconsequential thing, my GI decided to test me for celiac disease-- and to both of our surprise, I was positive. When I got the phone call, I was ecstatic! FINALLY. To feel validated about your symptoms. To know you aren't just severly dysfunctional, as I was starting to believe.

Now, I feel kind of strange--sometimes kind of sad & confused.

I feel like I have it good in comparison to many a disease, which seems like a strange attitude. And

sometimes I feel like I must have been misdiagnosed. I'm so used to 'ME' including these symptoms.

Last week, though, I had two really good days. They were fantastic, as I felt more awake and alive than I have in some 10 years. I felt like a child again. It was awesome & delightful.

This week, not as good. At the beginning of the week, I decided to make a nice big batch of food that both my boyfriend (who was just diagnosed with IBS {love in intenstinal problems I guess}) and myself could eat. To mask the fact that we have to be on these crazy diets, I decided on some FUN and SPICEY Indian Food (a recipe from an IBS cookbook)-- with a big teaspoon of asafoetida (or hing) in it.

All week I've been feeling that WAY that feel, "like paste" i like to say, and thinking maybe I WILL always feel this way. And then TODAY I had it in mind to research everything I had eaten and TAH-DAH, there it was-- ASAFOETIDA (Hing or Devils' Dung!!)-- which has gluten in it. WOW. So straight forward, this is. I ate something that makes me sick-- and there it is. I know I will get used to this, but WOW, I guess they really mean it when they say "when in doubt, leave it out".

ANYWAY-- I know you have probably all heard this kind of stuff before, but I just wanted to share, so THANK YOU for reading. I am very interested in staying tuned in, so I can save myself the trouble that comes in those hidden, small places. In just perusing-- ALREADY, I've learned that Gluten takes 3 mos to leave yr system. I didn't know. Thank you.

[Guhlia]

Welcome! Don't forget to eliminate possible sources of cross-contamination like your body/beauty products, soaps, etc. Also, don't use your old toaster, that's a HUGE risk for CC. It only takes a crumb to make you sick, literally. Good luck! Glad to hear you're starting to feel better already.

[tarnalberry]

Welcome to the board!

[CarlaB]

I tried to quote, but couldn't figure out how to do it ... you mentioned that you feel misdiagnosed. That's pretty normal. At least it was for me. Whenever I doubt, I just think of the last time I ate gluten by mistake!! You will have mistakes as you get used to the diet, but you will have fewer as you keep on learning. Don't take chances!!

[Mango04]

Welcome. You'll learn a lot here.

Thanks for the info on ASAFOETIDA.

[mouse]

Welcome to the board. I learned more here then I did with my over 300 hours of internet research on Celiac.

[Smunkeemom]

I know what you are talking about feeling "validated" I never suspected that all the problems I have been having all these years could have been caused by celiac, but I am finding out they could be. I haven't been gluten free for long, but since finding out my blood test was pos. I have been feeling better and better about having celiac.

Today I woke up so happy, I thought "this is going to be so great, eventually I won't be sick anymore"

I am excited to find out which health issue disappears first. (I am thinking it's my sinus problems, since I just realized I can breathe through my nose for the first time in 4 years )

Welcome to the board. Don't be afraid to ask a LOT of questions. There are so many super smart people on here, it's almost dumb not to ask them LOL

[clover]

Welcome! Don't forget to eliminate possible sources of cross-contamination like your body/beauty products, soaps, etc. Also, don't use your old toaster, that's a HUGE risk for CC. It only takes a crumb to make you sick, literally. Good luck! Glad to hear you're starting to feel better already.

Hi. I actually just read in a Celiac book that contamination from soap & such is a fallacy. What is your experience? My shampoo, which is the ONLY shampoo that relieves me of this horrible scalp condition I have, has WHEAT all over the ingredients, so naturally I am concerned. Thanks for your input.

[mouse]

As far as the lotions, makeup, shampoo's and soap. I use whatever lotion I have as I do not put my hands near my mouth. Some prople are so sensitive that the lotion bothers them. Makeup I don't wear, except for mascara and a gluten free lipstick. The lipstick is a must as you can injest that. Any soap I use on my face is gluten-free, but my body soap is not. My main shampoo is gluten-free as you can get some in your mouth. When I use a shampoo once a week to strip down the mousse, etc. I pay strict attention to keeping my mouth shut and make sure my face is rinsed well before I open my mouth. And yes, you can get contaminated by a little bit of gluten filled shampoo if you are not real careful. Others will probably disagree with me, but this works for me.

[Mabc]

Hi Clover,

I know what you mean about feeling like it was because you aren't "being good to yourself." What this translates to is "It's all your fault." I can really relate! I think that all the pain I have experienced physically is matched emotionally by being made to feel that I am the problem. Somehow I don't think right or eat right or feel right and therefore I make myself sick. I'm so tired of hearing that. It is such a burden to feel like it is all your fault and yet have no idea how to fix it. I've had lots of what you have (hypoglycemia etc.) I'm sooooooo glad for you that you FINALLY have validation and a REASON for why you suffer and something you can do to help yourself. I really really know how wonderful that news is. I don't have it yet because I've just begun being gluten free to see if it helps me. My doctor never ran that test but quickly decided that since it's chronic fatigue syndrome there's nothing he can do - so he quit trying to find out what it could be. Take care,

Melodi

[Lane R]

Hi!

Just know you're in good company. I just joined as well. I've been told I have a strong allergy to wheat, but I should just ignore it so it doesn't affect my life.

How has it NOT affected my life already?!

So, went wheat-free yesterday night, and so far - it isn't easy. Hoping I will grow to like more veggies and make it easier. I've already learned more here than most of the internet (where wheat allergy isn't as common as celiac, and even celiac information is contradictory.) Thinking of starting a blog, but don't know.

Thinking I might want to have my doctor test me for celiac...but I have the feeling she will say that I don't have it. Not looking forward to that fight.

Good to meet you all.

Lane

[penguin]

Hi!

Just know you're in good company. I just joined as well. I've been told I have a strong allergy to wheat, but I should just ignore it so it doesn't affect my life.

How has it NOT affected my life already?!

So, went wheat-free yesterday night, and so far - it isn't easy. Hoping I will grow to like more veggies and make it easier. I've already learned more here than most of the internet (where wheat allergy isn't as common as celiac, and even celiac information is contradictory.) Thinking of starting a blog, but don't know.

Thinking I might want to have my doctor test me for celiac...but I have the feeling she will say that I don't have it. Not looking forward to that fight.

Good to meet you all.

Lane

I noticed something wierd in your signature. You say that you had a strong wheat allergy intradermal, right? Most allergists won't do intradermal tests for food allergies because the majority of people react to the intradermal food allergens and it causes a false positive. Even the skin prick tests for food allergies aren't that reliable. Did your dr do a RAST blood test?

[Lane R]

I noticed something wierd in your signature. You say that you had a strong wheat allergy intradermal, right? Most allergists won't do intradermal tests for food allergies because the majority of people react to the intradermal food allergens and it causes a false positive. Even the skin prick tests for food allergies aren't that reliable. Did your dr do a RAST blood test?

True! I knew someone would point that out. I should perhaps keep it off and just say wheat-free since _____, but I have a really hard time with being inaccurate with information.

I had no reactions to any other foods on the list, except for wheat. I did do a bunch of looking around and found that intradermals aren't usually done, like you said. The allergist did not do a RAST blood test and, to be frank, I think he thinks it's not a big issue. He initially included wheat, yeast and gluten just to "appease" me. He was very surprised when it showed up.

I've had so much testing done lately, that I'm taking a break. I'll fight the allergist again in a few weeks.

I have also found that RAST testing is not very accurate as well. A research of some studies available between intradermal and skin prick showed intradermal to be much more conclusive than skin pricks with wheat allergies, and RAST to only be a little more accurate than intradermal.

The final statement by all? Elimination diets are the only conclusive way to prove a wheat allergy. Of course, if I had celiac, I may be easier to diagnose. Or perhaps not based on reading I just recently did. Not that I'd trade for it, thank you.

In reviewing a lot of the wheat allergy symptoms, I've found that I have a lot of them. So - rather than dealing with the continuation of snarky doctors and possible false positives and false negatives (as there's a possibility of both) I thought I'd try an elimination diet and see how I feel.

I'll be talking to my regular physician regarding testing for celiac, and go from there.

The final statement by all? Elimination diets are the only conclusive way to prove a wheat allergy.

Let me clarify that. Elimination diets AND/OR eliminating wheat from the diet are the only conclusive way to prove a wheat allergy. I'm not suggesting that I am actually on THE Elmination diet. I have eliminated wheat and gluten.

Just wanted to be clear!