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researchher

Uggh! Another Desperate Person Wanting Validation!

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Phew! I have been watching this board for a while and now I am going to finally spill out what's going on with me - I need a little encouragement!

The beginning - I have always had loose stools (except for when I was young, I had many reoccurant stomach aches and was hospitalized twice with pains mimicing appendacitis - they were diagnosed simply as constipation. I was given a shot for pain and an enema) About 3-4 years ago I was hospitalized for severe stomach pains. My white blood cell count was high. The doctors said it was mesenteric lymphytis - I was given an antibiotic. It reoccured within a couple of months and again another anitbiotic. Recently (3 months ago), I went on a low/no carbohydrate diet (I haven't dieted in years). I am overweight by 70 pounds. I lost about 30 pounds rather quickly. I felt great!! In fact, this rash on my face completely cleared up, I didn't have any problems with the bathroom. I slept better. My dysgraphia was cooled down. Everything was good. Then I got PMS cramps and felt entitled to indulge in chocolate brownies and many other starches - thinking whoohoo! I started not feeling well. I didn't associate it with my diet and ate more comfort foods because I wasn't feeling well. In the end, I ended up with very severe cramping, dizziness, confusion which lead to panic attacks (because I'm just a bit freaky), I felt nausious after eating. I felt like I couldn't go to the bathroom and then when I did, I completely emptied out! I had a WHOLE LOT of gas! I felt like I had premenstrual cramps even after my period. My face was completely broke out! I went to the doctors office, she didn't know what was going on. She did a celiac blood test it came out negative. She sent me to my OB. Everything looked okay. I made an appointment at my allergist and found many of my previous allergies were gone and nothing stuck out there. I continued to eat regular. I didn't want to go back on my diet until after I got better. I had to go to the ER twice. The second time they gave me an antibiotic because my white blood cell count was even higher. The antibiotic seemed to do the job and I started to get better within a few days. I went back on a more moderate diet and improved some. In the mean time my Dr. sends me to a dermatologist. She said Rosacea and gave me cream. Cream didn't do much but I remembered how much better I was on the low carb diet - especially if I stayed away from things like bread. After cutting out most wheat and sugar products - I drank a beer and immediately my facee turned really red and was hot. The next day I tried a little vodka again I had a reaction but not as severe. I had Niquil about a week later and got another reaction. Okay I finally got it. Oh, I forgot - my throat also got sore when I had these reactions. A couple weeks later after I had tried to cut all wheat, barley, yeast and excess sugar out of my diet - I went to a hot dog festival and ate several buns on thursday, I had birthday cake on friday and some noodles on Saturday. Uggh - very sick after the noodles. My stomach was cramping, bloated, I felt nausous, dizzy, disoriented, my face was broke out terrible and tingly, my throat was very sore, my dysgraphia was very sensitive (in fact I had bubbled up skin on my arms without even scratching) I went back to the NO ABSOLUTELY no wheat diet. I had my recheck with my dermatologist (my face still wasn't recovered) she said she didn't think it was just rosacea but thought I should see a GI for a food problem such as celiac or yeast intollerance. I went completely gluten free for about 3 days. My face starts tingling, my throat get sore, and I had pms type cramping after I ate a couple of things that I didn't think had gluten - red bag of Doritos, ranch dressing, carmal fiddle faddle, a polish sausage no bun with kethups, and rice crispee treats. I called my doctor to see about the GI appointment and she really doesn't think I need to go there. I have a feeling she thinks I am a hyprochondriac. I was really scared when I was having that attack about 3 months ago. I don't know if there is any family history. Grandma too has this same thing - with almost the same symptoms. She had to have part of her colon removed about 20 years ago. She said she's been through many tests - I think at the Mayo clinic (I think they were done more than 10 years ago). They said they didn't know what was causing it gave her Metamucil and antidepressents.

My oldest boy had a wheat allergy when he was young but has since outgrown it. We all ate wheat free for more than 2 years.

Today to test the theory I tried something. I have been gluten free except for the above listed stuff (rice crispee etc) for about 3 days. I tried 4 tablespoons of cream of wheat and immediately my stomach started bloating. I have had terrible gas and have been to the bathroom several times. My face broke out after an hour and my throat is sore.

I just want to know should I continue to press my Dr.? Is it possible wheat is just making me have a reaction without me being celiac? Are these common symptoms. What should I do now?

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi and welcome. :)

It sounds like each time you try a gluten free diet that you see improvements and each time you go off it you suffer, I would suggest trying the gluten free diet for 6 months and seeing how you feel then.

The testing is not reliable for Celiac, it is very possible to have a false negative through either bloodwork or biopsy. Diet can be a diagnostic tool.

A simple diet is good, avoid processed foods.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Sounds familiar....

My advice, call your doctor and ask for a blood test. If they say yes, get it right away and go completely gluten free, and keep a weekly log of how you are doing. If they say no, write down a list of all of your symptoms, go completely gluten free. Then, after 1-2 months on the diet (and being strict on it because it is the only way to get better), see how you feel. You will mess up and get sick, but do your absolute best to stay 100% gluten free. When you meet with your doctor show him/her your log and say I think I am gluten intolerant. When they see the positive dietary change over a long-term period of time they tend to believe you more. Also, if you are in the US there is absolutely no need to get a firm diagnosis. Insurance doesn't cover it and as long as you are out of school, really no need to have one.

Just keep in mind that there is absolutely no risk of hurting yourself if you are not gluten intolerant/celiac and eat gluten-free, but there are huge risks of not eating gluten free. It can be hard at times, but if you feel better (and you will), then it will get easier. And, if you need anything, we are always here to help.


Symptoms on and off my whole life

Major symptoms starting 2005

Zero blood antibodies

Gluten free with positive dietary response since April 2007

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Thank you for responding. I guess I wanted to get diagnoses because I heard you can claim the food on your tax returns if you are diagnosed. The food is so stinking expensive. I also heard that you have to go off of the gluten free diet in order to get a correct biopsy or blood test. I just don't know if I can do that. I get sick after I eat one time and after about 3 days I can't function. I guess I should just do the journal thing like you suggested. I just wish I hadn't tossed all of my recipes after my son got over his wheat allergy.

Thank you all for your help!

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Guest micah

The food doesn't have to be too expensive if you go to the basics like rice, meat, fish, vegetables, fruits.

The only way I can be successful on this diet for now is to allow myself my favorite non-gluten treats. That way giving up gluten is no big deal. There is no way I could stick to the low-carb diet, for instance because it is too restrictive. Maybe you could allow yourself sugar for now and just cut out gluten and see how you do. Maybe it won't be "the perfect" diet yet, but perhaps you'll improve and progress toward more health. If I try to change too much at once I don't succeed very well.

Just some thoughts...

:) Micah

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How could you claim food on your income tax?

You can claim the difference between gluten-free food and regular as a medical deduction. Medical deductions must be on the long form and also must be over something like 7% of your adjusted gross. Talk to your tax person, or if you do your own, read about medical deductions.

Also if you have a flexible spending account, most will allow the difference between gluten-free food and regular to be reimbursed through the medical flexible spending account. This would be the best way, since there is no minimum. Talk to your HR person or the person that runs the flexible spending accounts.

Both of these require a Celiac diagnoses. Since food is our medication, we can claim it as a tax deduction.

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Rice Crispie's have Malt in them which is made with barley which is a no no for Celiac's. Chips are notorious for cross contamination so the Doritos were probably also a problem (also they have milk if they are nacho or ranch flavored, which can be a problem if your stomach is already fouled up).

Do research and you'll find out quickly what you can and can't have, basically anything that has wheat, barley, rye, or oats in it you should stay completely away from for 6 months.

And like they said tests can have a false negative, many people on here have that problem. Trust the diet results.

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