Could This Be Celiac?

[DemmyDem]

I am 21 years old and I have been experiencing strange symptoms for the past 1 and a half years. My symptoms included on and off diarrhea every few weeks, dry itchy skin, fatigue, and leg and wrist pain on and off.

I visited doctors numerous times about this, have had blood panels and stool tests all which have come back negative. About 11 months ago, I heard about Celiac disease for the first time, and the gluten free diet. I went on the gluten free diet and noticed little improvement, so then I went dairy free as well. Then soy free, potato free, pepper, egg, corn, tomato, sugar, apricot, dried fruit, raisin, honey free, etc. I was down to meat, vegetables, only a few fruits, and rice. I saw very little improvement, infact I developed a skin rash and severe constipation because I wasn't getting enough nutrients. I did this diet for close to 9 months.

3 months ago, I started something called an anti candida/anti parasite diet because my symptoms seemed to worsen even while on my diet. No fruit, no sugar, just meat and vegetables and anti fungals the first month. By the end of the month, I broke out in the worst hives in my entire life and all I wanted to do was lay around and sleep all day. I attributed all of this to "die off" or so they call it. I incorporated anti parasitic herbs in to my diet and probiotics, along with L glutamine. After 2 months, I did not see an improvement and in some cases, I actually felt worst.

I visited the doctor 2 weeks ago for stomach pain after eating fruit and chicken, they took my vitals which all came back fine and they scheduled a follow up appointment in 2 months where they will run even more tests and procedures. The doctor I spoke with told me that he thought it could be an IBD or Celiac. I told him that I was only eating meat and vegetables and that I did not eat any gluten for almost a year. He scheduled a follow up appointment in 2 months where they will perform more tests and procedures, not sure what yet. So about a week ago, I stopped the diet and am eating normal food again. I feel fine other than having slight loose stools, whereas on the diet I had constipation. I'm so confused because I tried the gluten free diet and it did not help me. What could be wrong with me?

[CarolM]

It's impossible to offer/get comprehensive help without a proper diagnosis. The best way to get a correct diagnosis of Celiac Disease is via a biopsy of the intestinal tissue. (Alternatively, some doctors diagnose celiac disease after certain findings on a blood test. I was not diagnosed this way so I cannot speak to its validity.)

The first thing that comes to mind regarding your story is that there exists the possibility that you weren't following a truly gluten-free diet. I fully believe you when you say that you were attempting to follow a gluten-free diet, but gluten has a way of finding its way into a number of foods, and under names you might not recognize. The fact that you got no relief while on this diet indicates that either 1) you don't suffer from celiac disease; or 2) your diet included gluten without your awareness.

Looking at your description of your diet, my first reaction would be that it's VERY restrictive. I wouldn't be surprised that you might suffer uncomfortable symptoms after restricting your diet so severely. It really is best to radically adjust your diet only after proper medical evaluation. Additionally, some tests (such as endoscopies for a biopsy of the intestinal tissue) require you to be exposed to the suspected offender prior to the test in order to make a proper diagnosis.

Let us know how you're doing!

CarolM

[mftnchn]

Demmy,

Glad you posted here. While it is possible that some gluten has sneaked into your diet, it appears to me that you have thoroughly explored the dietary options as well as some other things.

I think it is wise to explore further testing, and hopefully you will get a diagnosis and some help.

You might pop in to the VERY long thread on this forum known as the OMG thread, as there are people there with various other issues who might have some ideas for you. You could consider the lyme disease thread on this forum too, just in case. There is a lengthy symptom list there in the first page or two of the thread.

Parasites are very hard to pick up in testing and very hard to get rid of. I wouldn't rule that out, in spite of what a GI mght tell you. I had a very ignorant NP at a GI office this summer who about fell off her chair when I mentioned passing worms.

I would wonder about other things like chemicals in food rather than the foods themselves, mold toxicity, heavy metal toxicity as perhaps being a factor in your sensitivity. Something seems truly amiss but it might not be gluten sensitivity.

[DingoGirl]

Demmy,

How frustrating.

If you were only eating meat, veggies, fruit and rice - it does sound like you were eating gluten-free - and since you were being so strict, I doubt you were using any questionable spices, etc. on your meat....and if you were getting such a minute amount of gluten - far less than before - I am not sure you'd react as severely as you did.

Any blood testing/biopsy would not be accurate if you've eliminated gluten - that's one thing. You have to be eating gluten fully for - I'm not sure how long before a blood test or endoscopy - at least a month, I think, but others will know.

I think there is something else going on with you, but I'm sad to say I'm not sure what. Were you hit suddenly with illness, did this come on gradually, or was it always there and getting worse?

You CAN go on a strict gluten-free diet without medical consultation - in fact, most doctors don't even know what this is or what it's about. Most of us are our own advocates here, adn have had to to tons of our own research to figure out how to eat and live.

I'm sorry I don't have more answers.......but it sounds like some detective work is needed. A REALLY good doctor could help also.

Just wondering - could there be any kind of toxic mold situation in your living environment?

keep us posted and keep asking questions.

[DinaB]

Hi there,

So sorry to hear all of this. It does sound very familiar to me. I did the whole candida diet (almost 1 1/2 yrs, thinking the whole time I couldn't tolerate yeast, or the carbs and sugar that parasites and yeast feed off of. I was only part right. At a certain point in the program, I had hives and was itchy all of the time. Of course the doctor attributed this to "die-off" and told me to continue and not stop. For almost 2 weeks straight I could not stop itching. It turned out that I was allergic to the probiotics and supplements (most made from milk/wheat). I stopped the program and then went Gluten Free. The majority of problems stopped, but then slowly crept back. Finally the digestive doctor ordered a breath test for SIBO (small intestinal bacterial overgrowth), which came back positive. He gave me a round of antibiotics and within 2 weeks I gained 12 lbs. The bacteria in my stomach was consuming what little sugar/carbs I was eating at the momemt, thereby I was suffering from malbutrition. Also, it was preventing me from digesting any carbs. I would get bloated/gassy almost instantly. Now that is gone I have been Gluten free since August 07. I still battle what to eat because I have a ton of food allergies, but feel so much better than last year. I hope this helps. Digestive Enzymes also help.

[DemmyDem]

Thanks for the responses guys. Yes, I was extremely strict with my diet for almost a year. I never ate out in restuarants, I never ate from other people even if the food was gluten free, I used very few processed foods, and when I did I would research on it like crazy before ingesting it, this included spices and breakfast cereals. I steered away from gluten free replacement food products because those even made me sick. Cross contamination or hidden gluten wasn't an issue. I used gluten free soap, shampoo, i bought new cooking ware, let's just say I made every effort to be as gluten free as possible, yet I was still getting violently ill every week to every 3 weeks. I even got sick from eating certain fruits and vegetables I believe. Everything was making me sick, idc what it was. And I wasn't eaven eating any other allergen foods. Only meat, like 3 different kinds of fruits, only some vegetables, and rice/gluten free rice cereal (the only ingredient in the cereal was whole grain rice).

I'm so angry because the doctor I saw says its probably a gluten problem....How the heck could it be a gluten problem if im not even eating the darn stuff? How? I'm gonna request a biopsy in a couple months, i've been eating gluten again for almost 2 weeks, im eating everything without incident except for beans and sugary things and eating very little tomatoes. I feel 20 x better than when I did while on the diet, I am still worried about Celiac so I will test for it hopefully in a couple months. Theyre going to be doing some other tests on me but im not sure what yet. I'm gonna look in to fructose malabsorbtion too, since I get sick from really sweet things or foods with HFCS.

Candida program made me feel very sick. I have never had hives before, but some of the anti fungals gave me really ugly hives. Other than that, I don't think I really benefited from it much. It didn't help with my itchy dry skin problem any, infact it made it worst. It was just a big disaster to say the least hehe.

Digestive enzymes were making me sick, I was 100% sure it was gluten/dairy/potato/everything free, yet I felt my worst everytime I took digestive enzymes. I would get really bloated, then i'd get "D" for the rest of the day.