Looking For Answers

[Marlee]

Hi there,

I know I have some kind of wheat sensitivity but not sure if it's actually Celiac. After reading a ton of posts I'm not so sure since I am overweight and have never been anemic. I first noticed I had a problem with wheat after I had been on a low carbohydrate diet for about a year and then fell off and started eating bread again. I felt horrible! I guess I had just been used to a low grade awful before.

My symptoms when I first started eating wheat again were: trouble breathing and wheezing, congestion, cough, flushed face, heart beats fast, headaches, no energy, tired, lethargic, depression, anxiety, panic attacks, Eczema, my joints ache horribly and constipation. The longer I go eating it the more symptoms I am getting. Lately I am experiencing bloating, constipation with diarrhea at times as well, heartburn, gastric reflux. I get to the point that I'm so miserable I can hardly get out of bed.

When I go back to not eating wheat I feel 100% better. My symptoms are reduced probably about 80%. Of course, I was never that particular about getting rid of gluten particularly and would eat barley and things that had wheat additives. I also never thought to look at skin care products or medications for wheat ingredients.

I talked to my doctor about this and he gave me an antibody blood test for Celiac. I wasn't eating any wheat or gluten at the time as I was on low carb again so I guess that might have skewed my results which were negative.

I know the obvious answer is that if it makes me sick don't eat it... but I guess I still would like to know conclusively if I have this. I can't really afford to do the lab tests but wondered if my symptoms were similar to anyone else's cause a lot of them seem different than what I've read.

Any information or guidance is welcome, thank you for taking the time to read all this

Marlee

[mouse]

My symptoms were like yours for about 30 years, when they bcame chiefly diarrhea with terrible heartburn, reflux and horrible stomach pains. Then dehydration set in for 9 days before I was diagnosed. I had very little gluten or food about 5 weeks before the diagnosis and then the 9 days without even able to keep water down. My blood test came back definately Celiac but on the low side. Which I am to understand is because of the lack of gluten in me. If you had been gluten free for a reasonable length of time then yes you can get a false negative. The only way to get a difinative answer is to do the gluten challange which I understand is not pleasant. As you have to make yourself sick to do this. We have a member right now who is doing this. Others have also done it. Some have just gone gluten-free without the test as they did not want to make themselves sick again. Others will post on this and then you can make your decision. Good Luck.

Oh, and I forgot to say WELCOME to the forum and hope that you find some of the answers you need.

[Canadian Karen]

Hi Marlee!

Welcome to the board! It's a great site to learn alot about celiac or gluten intolerence. Very friendly people here.....

There are many celiacs here who have presented as overweight, not underweight. I think that has alot to do with the old way of thinking (for doctors anyway), that a celiac has to be rake thin, frail or a child with a protruding belly...... It's the same with bowel movements - most think that celiacs ONLY have diarrhea - wrong- I believe it is as many as 30% of celiacs present as constipation instead or combination of both.....

It really would have to be a personal decision for you if it would be worth it to go back on gluten for further testing. It an official diagnosis really necessary (for insurance purposes, for example...)? If not, I would just go with your "gut" feeling (pardon the pun!) and stay gluten-free. Even if you do not have the classic "celiac", at the very least, you are gluten intolerant anyway.....

Have you read the book "Dangerous Grains" yet? If not, I would highly recommend it - it's a MUST READ!

Any questions you have, just post away! Trust me, there's not too much we haven't discussed in detail here!

Take care,

Karen

[Marlee]

The only way to get a difinative answer is to do the gluten challange which I understand is not pleasant. As you have to make yourself sick to do this. We have a member right now who is doing this. Others have also done it.

Thank you for the warm welcome and kind words I'm curious what the "gluten challenge" is ... I did a search and didn't find anythng about it.

If not, I would just go with your "gut" feeling (pardon the pun!) and stay gluten-free. Even if you do not have the classic "celiac", at the very least, you are gluten intolerant anyway.....

Have you read the book "Dangerous Grains" yet? If not, I would highly recommend it - it's a MUST READ!

Any questions you have, just post away! Trust me, there's not too much we haven't discussed in detail here!

Take care,

Karen

I think you have a good point there. Although my main problem right now is staying gluten free. I'm not smart like the rest of you folks and I keep eating things I shouldn't just cause I love them my husband gets so mad at me for giving in to having pasta or something and ending up sick over it. I will check out the book you mentioned. I havent' read any books about this and this website is pretty much the only info I've read at all. I'm learning a lot though

Thank you for the warm welcome as well. This seems like a very informative board with some great caring people on it.

[plantime]

Hi Marlee, welcome to the board. I am an overweight adult, and I am a celiac. I was overweight with constipation when I was diagnosed. A lot of the symptoms you are describing are celiac. Whether or not you get testing done is up to you, and what you need. The diet responses are a good test, and in fact, probably the best test for celiac and gluten-intolerance. You are welcome to come here with any questions, and just to talk with us!

[Marlee]

Thanks again for the warm welcome and good tips. I was going to wait another day or two to change my diet completely but after last night I really have no choice. My symptoms are getting worse daily and frankly I just can't handle feeling that sick anymore. My joint pain was so bad I couldn't do anything yesterday until I took some painkillers. Last night and the night before I could barely sleep. Just lots of pain and stomach bloating horribly. The last couple of days I've had a lot more cramping as well as ummm.... after eating needing to go the bathroom very quickly (trying to put it politely). Also, extremely vivid bad nightmares... ugh what a night.

So, starting today I'm going to start stumbling into this gluten free lifestyle. It usually takes me around 3-4 days to start feeling a little human again so I have that to look forward to.

Does anyone have any tips for hidden sources of gluten/wheat in foods? I normally try to eat as unprocessed as possible but this time I want to look for some substitutes instead of going without all the foods I love. I think this might help me stick with it better.

Also, one other question (I know I'm just full of them I've been reading about sensitivies to nightshade things.. like potatoes, tomatoes and just found out that tobacco is in the same family. I smoked for a long time but have been quit now for almost 10 years. I've found over the years I can tolerate less and less cigarette smoke and usually if I just walk into a store past people who are smoking now I will usually be ill for the rest of the day. Sooooo... of course I'm worried that I my be sensitive to tomatoes and potatoes now too.. (two of my most favorite foods).

Thanks for any help... .sorry to be so wordy...

[CMCM]

You kind of have your answer with how you feel eating vs. not eating gluten. For you at this point, it comes down to being sick enough of being sick....and that will give you the motivation to follow the diet. You just need to be fed up with it all.

Your symptoms were pretty similar to all mine....they all seem so unconnected, yet they are all connected to celiac/gluten consumption.

I was a very slim person most of my life, but then I put on 25-30 extra pounds in the last 20 years and not much could blast off that weight. 3 years ago I did the Atkins diet for 6 weeks and effortlessly lost most of the weight and I felt incredibly great on this diet. Fast forward to now, since I have my diagnosis, I look back and realize I felt great on Atkins because for 6 weeks I ate absolutely no grains and no starches and no sugar. I'm on that diet again now, and the weight is dropping off very quickly.

I'd really suggest you get the Enterolab full panel test....it will tell you if you have antibodies to gluten being produced, if you have any malabsorption, and also a gene test for celiac/gluten. If you are a person (like I was) who wanted something definite to spur me on with this diet, this is a good use of your money.

Ultimately, after eliminating all gluten items from your diet, you may find you have other sensitivities.....most likely you do. You have to carefully experiment and see what happens. All I can say is that once you feel "normal" again, you will not be as tempted to eat the things which make you sick. It all gets easier, believe me.