Newly Diagnosed Celiac

[rmmadden]

Hello.....My name is Bob from Cleveland and I have recently been diagnosed as having Celiac Disease (December 2004).

My health problems started in August when I had a case of food poisening and I just never recovered. I couldn't eat or drink anything without heartburn and generally was just feeling lousy. I lost 20-pounds in 2-months time, had a lot of trouble sleeping through the night and just didn't feel well on a day-to-day basis. The Dr. had me try Reglan, Pepcid AC and finally Prevacid. I did find some relief from the Prevacid and had days where I felt better but not quite 100%.

After 3-months of taking the Prevacid (and not feelling well enough on a consistent basis) I asked to take the Endoscopy test and they found damaged villi (and confirmed with follow-up blood work) my celiac disease. I realize I am lucky to have been diagnosed as quickly as I was because I have read some of the horror stories online about people going years before being properly diagnosed.

My main question/concern is a reality/sanity check in that I would like to know that I am not alone in the various symptoms that I have:

-Gas / Belching

-Bloating

-Jittery / Shakey Feeling If I Don't Eat

-Jittery / Faint Felling If I Eat Gluten or MSG

-Chest / Muscle / Bone Ache (Sensitive To The Touch)

-Trouble Sleeping (Wake Up After 4-hours & Sometime Toss-N-Turn)

-Light Headaches

Not knowing what the problem was in the beginning caused me great anxiety as I did suffer a few panic attacks (especially related to the chest/muscle/bone ache as I was afraid it was heart related). I have been walking/exercising regularly and It makes me feel better during and after as my aches generally go away. In the beginning the exercise was the only thing keeping me from going totally nuts over the chest ache because I could do the exercise and get my heart rate up (120-130 Beat Per Min.) and not suffer any pain or shortness of breath.

I am trying to avoid Gluten and learn all I can to hopefully start feeling better but, the hidden glutens have been getting the better part of me. From bullion cubes containing MSG to Rice Milk containing barley enzymes I have had a tough first month. I have been taking vitamin supplements, food enzymes (all checked for Gluten) and juicing (Apple/Carrot/Celery Juice Is Better Tasting Than You Would Think) to try and keep my immune system up. I also use "Magnet Therapy" to help alleviate my gas pains & muscle/bone aches.

Any insight or helpful tips from you celiac disease "Veterans" would be greatly appreciated to this celiac disease "Rookie". Sometimes it feels like I am trying to fight the tide from coming in (Sorry, bad analogy after the Tsunami -- God Bless Those People!)

Bob

[barbinwisconsin]

Hi Bob:

I can certainly relate. I was diagnosed last May & I am still trying to cope with it. (And not doing very well.) It is so frustrating to find that there is so much you CAN'T eat. But there are a lot of us out there, so you will get plenty of advice.

If you like Mexican food, you can eat lots of enchiladas made from corn tortillas - I go out to eat Mexican every week & have enchiladas, rice & black beans.

[jdlehman]

Hey Bob,

I was also just diagnosed with Celiac and I was having a lot of the symptoms you described. Some of which I have had for most of my life, especially feeling jittery and shaky if I don't eat constantly. I don't sleep well at night either. I do have a way to help the shaking (besides drinking). I changed my eating habits so that instead of 3 big meals a day I was eating something about every two hours. This can be adjusted to fit your needs. This had several benefts for me. I ate a bigger variety of foods, especially more fruits and vegetables, also it kept me from stuffing my face since I never really felt starved. I don't know if that will help, but it's worth a shot if you haven't tried it.

Josh

[MySuicidalTurtle]

Hello, Bob! I had (or still have) all those symptoms you described. I developed terrible anxiety after my diagnoses.

My best advice would be to stick with real health food. . .the kind that lists everything and is real simple. . .no funky hard to read/understand words. While you know what you're having there, then you can start to learn more about other more common products/easier to find products. Just always make sure to call the company!

[darlindeb25]

morning bob---all of those symptoms can be associated with celiac--even the panic attacks---i have been gluten-free for 3 1/2 yrs now and i find when i have sleepless nights now and joint pain, it's because i have gotten some soy in my system--i am now soy limited too--no mayo, no soy flour, no MSG (which is soy protein)be very careful of tuna in water, the water is a veg broth often made with soy--truthfully, soy is in much of the things that are gluten-free--it's hard to find the hidden sources----also, are you reading the ingredients in your shampoo, soaps, lotions, aftershave, any medicines--they all can contain wheat, oats, or barley---you must read everything, i know it's hard, but it is our way of life and believe me--it still isnt 2nd nature for me--i still find myself missing things never give up deb

[mela14]

Hi Bob,

I went throught the same ordeal as you but it took much longer to get a diagnosis. The drs thought and had me believe it was all stress related. I did the Reglan,Prevacid, Propulsid. etc. but never really felt good. I always felt better when I didn't eat but of course you just can't do that.

I feel that I am finally getting to the root of my evils but it hasn't been easy. Although I think I am gluten free I must still be getting it from somewhere as I have been experiencing reactions. I have a lot of problems with medications and haven't gotten that down pat yet. the reality of a little pill causing me so much harm hasn't set in yet. lately, generic zantac has been doing me. I stopped it yesterday and already woke with less pain...hhhhmmmmm.

I guess you just have to keep doing detective work with everything that goes into your mouth. this board is a great place to learn.

good look with everything and know that we will all be right here.

i have learned a lot from this board.

mel

[jknnej]

Hi Bob,

We all seem to have those symptoms-even after going gluten-free, I started getting light headed and shaky like one of the other posters. I now eat on the hour, every hour and it seems to help a bit.

For anyone else out there: does this "mental fogginess" ever go away?

[Maggie1956]

Hello Bob,

Yes. All those symptoms are the same as what I have also. I was only d/xed Dec 2004, so it is all very new to me as well.

There is a lot of great information here at celiac.com

Take a look at the Site Index. Follow the list down to:-

A Summary of Celiac Disease and Gluten Intolerance by Scott Adams.

That's where I started. Also, get as much info from here, and whereever you can find reliable answers.

Hang in there. It sounds like you're doing a great job so far.

[rmmadden]

Thank you, thank you, thank you everybody for your tips and input. It really does help me feel better knowing that I am not alone in this constant battle.

I have looked into my aftershave, soap, etc. as I had a day last week where I had a severe headache and I was able to trace it back to my shampoo and hair jell which both contain wheat protein. Also, I was working in my son's bedroom removing a wall paper border and scrubbing/scrapping the residue away. Half way through I started feeling lousy and wondered if the paste (residue) contains gluten. After researching it online sure enough the paste does contain wheat starch. That one got me for 1-1/2 days.

One tip I can offer for anyone with muscle/bone aches is to try magnet therapy. You place a natural magnet on the spot where you ache and it increases the blood flow to the spot and draws the pain out. I use mine almost every day as it does bring me relief.

Bob

[Deby]

I had celiac disease for 15 years without knowing it. So I don't know if my symptoms will ever all go away. Though I no longer feel as though I must have cancer. I know my son who is also celiac disease, had tettible bone pain.

There are related auto immune diseases such as RA, Mental illiness, IBS, Diabetes. I have one of the antibodies for type 1 diabetes and feel very light headed if I don't eat regularally. I have to plan ahead, especially if I'm going to be out of the house. There aren't very many quick foods around that are gluten-free. I can just run into 7-11 and grab a snack.

[lovegrov]

In most people the mental fogginess will diminish, but it can take a while.

richard