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laneave

Should I Stay On The Diet?

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Hello!

I'm a 21-year-old female, and I've been gluten free since January 1 and dairy free since January 31, but I haven't noticed any difference (except that I'm having lots of dreams of people trying to kill me...?).

The main symptoms I've had for years include trouble sleeping, irregular and difficult bowel movements, anxiety, depression, abdominal pain, and the one that got me to finally try the diet is chest pain. For about a year, I've had dull, achey pain in my upper left chest. My doctor said it's gastritis and told me to take 2 antacids a day for the rest of my life. That's not what I'm interested in; I want a real answer. I asked my doctor if I could change my diet or something, and she didn't really support that. She told me that spicy foods were causing the pain but also that I still need the antacids. However, I don't eat hardly anything spicy. Maybe some mild salsa once a week.

About 5 years ago several of my family members started discovering gluten issues, so I had blood tests done. The first bout were positive, but further tests were negative. This past June I had a colonoscopy and EGD. The biopsies were negative for Celiac and Crohn's (which my mother has). My gastroenterologist said my esophagus and stomach were irritated, but he acted like it was pretty minor. He told me to try 3 things: Miralax, Librax (a prescription muscle relaxer for I don't know what), or a gluten-free diet. Again, I don't like band aids, so I'm not in favor of the first two suggestions.

My great-uncle has dermatitis herpetiformis, my grandmother has the Celiac gene, and I have aunts, uncles, and cousins who have responded positively to the diet, though I don't think they necessarily have any positive test results. My dad has some symptoms, and he also had positive results on the first round of blood tests. But then he had a negative biopsy, and none of his potential symptoms bother him enough to make such a life change (and neither did mine until the chest pain).

So here I am, trying the diet, but not noticing any change. I feel that I've been as strict as possible on the diet, so I'm trying to determine if there's anything more I need to do before I reintroduce gluten.

I truly appreciate any input! I've been making a lot of use of this forum for several weeks, and all of you are so helpful! Thank you!

- Laura

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Welcome to the forum Laura.

You said you had some tests that were positive? Do you have the numbers and ranges so that you could post them. There are people here that are good at understanding them. Did the gastro take any biopsies when you had the endo?

I think you should give it more time, at least three months. Have you replaced scratched non-stick cookware, wood utensils and cutting boards, any scratched plastic kitchenware and replaced your old toaster? Do you live with or kiss a gluten eater? Have you checked your lipstick for gluten?

These are a few things that may hinder you from getting better.

If your great uncle has DH he has celiac. Many people with DH have negative blood work and biopsy.

It sounds like your dad has it too with positive blood work.

Stick around and ask any questions and read as much as you can.

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Thanks, Dixiebell!

I phoned my mom and she read me the results from tests done in 2003. Here's what I have:

I think these were the initial tests that we were told were positive (and my mom had a little trouble deciphering some of the stuff, so if something looks strange, it might be wrong):

Gliadin 166 55*

Gliadin IGA < 20

anti-endomysial < 1:10

Gliadin IGG 55

Gliadin IDA < 20

I think these were the second round, and they were done with Promethius labs:

anti-gliadin IGA ELISA .08 u/mL

anti-gliadin IGG ELISA 1.0 u/mL

anti-endomysial IGA IFA negative

anti-human tissue transglutaminase IGA ELISA .4 u/mL

total serum IGA by Nephelometry 284 mg/dL

pro-genologix HLA-DQ2 detected/HLA-DQ8 not detected

My gastro did take biopsies, but they were negative.

I thought 4 weeks was the standard for trying the diet

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I am not the best with these numbers so I hope someone else can help.

About the kissing, get him to brush and rinse really well before you kiss. I don't think he will mind if it helps you get better.

Since you just found out about the cookware, I would give it some more time.

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I think with a postive test in the past, all of your family history, in addition to your ongoing symptoms, it would be worth it to stay gluten free for a long term trial. It can take varying lengths of time for people to see results. I was seeing some improvement in the first month, but the serious improvements came several months into the diet. I also would encourage you to consider the secondary food intolerances as a possible issue. Dairy, Soy, Corn, and Nightshades can cause one to continue to be symptomatic in spite of being gluten free. It is very common for secondary intolerances to be an issue. Soy is particularly bad for me. It causes swelling, joint pain, stomach problems, diarrhea and/or constipation. I was shocked at how many foods it is in.

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I agree that you should give it more time and feeling better on a gluten free diet is a positive test. :) Just as, if not more accurate than, a blood test. And biopsies are truly barbaric in my opinion.

I've gotten glutened from kissing my gluten-free husband several hours after he ate some contaminated chips. The only indications he has that there is an issue is his back rash flairs up the next day and he gets a bit spacey. I have cecum pain and everything from headaches to joint pain to muscle spasms and DH.

Have you taken it out of your soaps, shampoos, hand sanitizers, laundry detergent etc...? Do you cook gluteny meals, work in a gluten filled environment? It doesn't take much to keep you sick. :(

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