Negative Blood Test, gluten-free Diet Improves Symptoms

[Guest cassidy]

My mom has Dermatitis herpetiformis, the skin reaction to gluten. Once she started researching Celiac she noticed that I had a lot of the symptoms. My molars can in without enamel on them, I was anemic as a child, my stomach and intestines hurt every time I eat and I have D about 4-5 times a day, everyday. I never knew that other people didn't feel this way after they ate because I have always felt this way. I also have frequent headaches, generally feel hungover even when I'm not drinking, irregular periods adult acne (almost cleared up) and reflux. I went to the doctor and had the Celiac panel run and my blood test came back negative. I started a gluten free diet and I feel so much better. I can finally eat and not have it hurt afterwards. I have also noticed that if I eat something that I didn't realize had gluten in it I have the same symptoms as before. So, I'm pretty much convinced that this is my problem.

My question is, how do you deal with family members/friends who question the restrictive diet if you haven't been officially diagnosed? My husband is upset that I am following this "strange diet" and "self diagnosing" myself when the blood test came back fine. When I go out to eat with others (often in my job), I am checking to make sure the food I'm eating is safe and people ask why I'm doing it if my test came back negative.

I've read about the stool tests. I know they are available online, but can your doctor order the same tests? I have insurance and would prefer to have it covered.

I feel like I need a "diagnosis" so that I can defend my choices to people who are questioning my "strange diet."

Have other people experienced similar reactions?

[ianm]

My ex-wife used to throw a fit about the diet because I never got tested so I sent her packing and got divorced. My girlfriend has absolutely no problem with it and has gone gluten-free herself. If you feel better on a gluten-free diet then what more do need to know? It is your body and it is your responsibility to take care of it. If others have a problem with it then TOO DAMN BAD!

[jerseyangel]

There are people on here that have been diagnosed by their doctors using the positive response to the gluten-free diet only. As far as the co-workers, friends, etc.--I would just say that you are gluten intolerant and can not have anything with gluten, period. Then just do what you have to do--no need to make excuses to people or apologize or anything. I don't go into the details of my medical situation or how I was Dx to prove to people I have Celiac--or anything else, for that matter.

[Rachel--24]

I agree with Ian. You don't have to defend your right to feel good to anyone. Ask them if they would deliberately eat/drink something that they KNOW will bring them pain and suffering. The tests arent 100% accurate for one thing. You could also be gluten intolerant rather than Celiac which does not put you at any less risk for future problems/diseases. The only treatment is a gluten-free diet in both cases. Your husband may think its odd that you're on this diet but if you're body isn't liking gluten and your immune system is responding negatively to it you are setting yourself up for possible serious helath complications down the road if you continue to eat it. No test is as reliable as the response your body is giving you when you eat gluten and then stop eating it.

You can get tested through Enterolab but I dont think many insurance companies cover the cost. Maybe there are some who have gotten their insurance to pay some...but I think most people pay out of pocket. I paid $350 for all the tests including the gene tests.

[Guest cassidy]

Thank you all very much for your support. I talked to my husband and he said this is hard for him to. He has never been sick so he really doesn't understand what I'm going through. He said he has accepted it and will be supportive.

As for eating with others, I figured out what I was doing that was inviting the questioning. I kept saying I may be allergic to gluten. So, people would ask questions. I tried just saying I'm allergic to gluten. The person asked what gluten was and what it was in, and that was the end of it. It helped to know that doctors may use the diet to show that is what your problem is, I will just be confident when I need to explain things.

I am also having stomach surgery in the beginning of February. I've been having lots of tests done - I have to eat marshmallows and a bagel dipped on barium on Thursday. Luckily, I get to bring my own food so I got a gluten free bagel to bring. I'm also having an endoscopy soon so I asked them to check for Celiac while they are down there.

I will also be on a soft diet for at least a month afterwards. I'm trying to identify gluten free soft foods that will help me gain weight. I need to put on some weight before the surgery also and I have lost 2lbs in the last 2 weeks. So, I'm going to look up some fattening foods and see if I can find some gluten free junk to eat, because eating well is not working.

This message board really has been helpful. There is usually an answer to every question I have. Thank you all.

[zip2play]

I too have started gluten-free living with a questionable blood test and negative biopsy! It is difficult. For me, my husband was supportive, but his attitude was...if there is no damage, a little gluten won't hurt. I think I finally have him convinced that it is either ALL or NOTHING!

Good luck with your upcoming surgeries! please let us know how things pan out!

Monica

[debbiewil]

Hi,

Just a note on the diet, we DO have the right to choose what we eat. If you chose not to eat pork or shellfish for religious reasons, no one would question it. If you chose to eat vegetarian or vegan, it would be accepted. I don't know anyone who doesn't choose not to eat certain things, just because they don't like the taste. (My mother never could get me to eat liver!) So if you choose to not eat gluten, it should be accepted just as readily. You don't like gluten (you don't like what it does to your body) so you choose not to eat it.

As far as soft foods go - rice pudding, ice cream, full fat yogurt and sour cream with fruits and seasonings, applesauce with cinnamon and sugar, hot chocolate, chocolate pudding - I could get into lots of trouble with only soft foods.

Debbie