Questions About A Gluten Challenge

[gf4life]

I am almost finished with my gluten challenge and will be going in for my biopsy in less than 3 weeks. I was just wondering, for those of you who have had to do this, is two months eating a LOT of gluten enough to show damage. I know it is affecting me, I now have a DH-like rash on my hands, and plenty of other symptoms returned when I went back on gluten, but I am still wondering if it is causing enough damage in my intestine. I really would like to have my doctor acknowledge that I do have celiac disease, and be able to ask for other tests for nutritional deficiencies, as well as be able to get the follow up tests to make sure I am healing properly on the gluten-free diet. I already have appointments for my children to see a Ped. GI specialist, so I am not worried about getting the biopsy for their benefit, but I will be gluten-free for life after this biopsy, no one will ever be able to get me back on gluten(at least not on purpose!). So this is it. At the very least I feel like we will have established a documentation of what my intestine looked like on gluten, and maybe compared to a post-gluten-free biopsy would show a difference? I don't know if it is worth it, but I worked for two years trying to get the darn biopsy and feel like giving up now that I am finally going to get it would be stupid.

I made the decision to have the biopsy after about 6 weeks of conscideration. I have not asked for advise on the subject for over a month after getting a lot of criticism for going through with it. I do not want to be criticised further, but would like some kind advise. I am very emotional right now, since I have been on(or I should say overloading on) gluten since the end of November, and feel terrible. Any help would be appreciated. I guess I just need a little boost of support.

God bless.

Mariann

[tarnalberry]

I'll lend my sympathy. I'm considering doing a biopsy as well, and, frankly, scared to go back on gluten. Good luck getting through the last of it. :-) Hang in there, and you can lend me some sympathy if I follow your footsteps. :-)

Tiffany

[ROYAL BLUE]

My son was not diagnosed by biopsy, we went through the motions but the biopsy had to be aborted due to an asthma attack. The DR. said to go ahead with the gluten-free diet and try doing the biopsy next year if I felt comfortable about it. I am scared to try it again because the anesthetic brought on the asthma attack and I have heard that going back on gluten can make a person extremely ill.

[gf4life]

Thanks guys, for your sympathy and support. If I had been gluten-free for longer I might not have gone through with it, but I had only gotten my test results back and been gluten-free for two weeks before my doctor finally agreed to do the biopsy. I knew this might happen, and had made my decision ahead of time. I was feeling better after two weeks gluten-free, but certainly not 100% yet. I don't know if I would have been able to handle it otherwise. The first week was horrible and then each week got a little easier, but it wasn't that my symptoms were lessening, I was just getting used to feeling bad again. My symptoms are worse now than before, except I am trying to be dairy free and that helps a bit and I no longer use Aleve, which I believe was causing a burning feeling in my intestines, so that is a bit better. I don't think I would ever want to put my children through this. I have left them on gluten until they are done with their tests, but I do notice they are getting a bit worse each week. I wish they would hurry up and schedule the appointments, but I think the doctors office has been closed for the holidays. Specialists are not like regular doctors. They don't seem to ever be available during holidays! Monday I should be able to get an appointment set up for my kids. I have been assured that the referrals are done and they have them, just need to set a date! I do not want them telling me that they have to wait for months to have the tests done, they had better do them soon! Well, I am rambling, so I had better quit. Thanks again.

God bless.

Mariann

[DLayman]

eight weeks should be enough!!! If not forget it!!!

I know how you hurt!

When is the biopsy? My son goes in on the 21st. He is only eating 1/2 slice of bread a day.. he kinda normalized.. and I think it is like you say you get used to it.. but the one day when he got a peice of whole wheat toast at grandmas I did notice his belly bloat and he was up really late and didn't nap and then had one of his worse diapers of late.

We have been able to keep them at a peanut buttery consistancy at least.. he has lost about a half a pound..

I hope you will let up a little on the gluten.. I don't think you have to eat sooo much... just some!

Keep us posted!

I may be following your footsteps soon!

[gf4life]

dlayman,

I am overloading on gluten in the hopes that it will show up on the biopsy. I think that I tested negative on the blood tests because my regular gluten diet was too low on gluten to cause enough damage to produce antibodies. I don't ever want to be on gluten again, so I want to know I did everything within my power to get accurate results. I only hope the doctor and the lab does a good job. Thanks for your support, and I'll keep your son in my prayers. For your whole families sake, I hope his test is accurate.

God bless.

Mariann

[Lily]

Mariann,

I am right there with you. I had been "mostly" gluten free for a couple months, when in November, they told me to go back on it. I was sooooo scared to start eating it again. I had my biopsy in December after 3 weeks of ingesting the gluten. Only being off gluten for a couple weeks, your body wouldn't have much of a chance to heal I think. After my biopsy, my dr. said "it's a mess in there!". Gee thanks, lol. Anyhow, I feel terrible, horribly depressed, etc. I'm just waiting for the final blood test to come back. He's told me I have Celiac Sprue, but I want to have a my ducks in a row and proof by paper. I want to do this because for 35 years I have been seeing dr.'s with no luck in them actually finding out what was wrong with me. I think Celiac has caused all my other problems and want to have the proof behind it. The dr.'s still seem to want to treat each thing separately as though they aren't related, which I don't understand.

Here's some info about where gluten hides I found somewhere if anyone is interested.

Gluten is hidden in many unsuspecting foods such as licorice, soy sauce, malt vinegar, some flavorings, most processed foods, self-basting turkeys, some cold cuts, and many prepared stocks and soups. Vinegars and alcohols that are properly distilled should not contain any harmful gluten. However, if additives have been added after the distillation process, they may contain gluten. Gluten is also used as a binder in some pharmaceutical products and can be the starch in unidentified food starch, modified food starch, caramel coloring, hydrolyzed plant or vegetable protein. It's also important to avoid products where the ingredients are of questionable origin or are listed as simply "natural flavorings, flavor extracts, or spice extracts" as gluten may be used in processing them

We can get well together. I am just now starting back on gluten free. It's tough, but I can't wait to actually feel well some day, something I've never experienced.

Lily

[gf4life]

Hi Lily,

I just don't get why so many doctor's just treat the symptoms and don't even look for the underlying disease! I've suffered with this since as long as I can remember, being hospitalized when I was 4 years old with joint problems, and to dozens of doctors in the past 30 years for my GI issues and no one EVER even mentioned gluten or celiac . I had never heard of it, until I stumbled acrossed a Wheat free cookbook by Bette Hagman, and started reading the Intro where she tells about her years of illness and found out she had celiac disease. I was amazed because it sounded so much like me and my health issues. I went trying to get a diagnosis and two years later am still fighting the medical system! I did get my confirming diagnosis by Enterolab, but as that is not accepted by the medical profession, I felt I needed the biopsy. I want the follow-up care I feel I deserve to get. I won't take supplements unless I know I need them, since they make me feel bad, so I want tests to show me if I need extra calcium, magnesium, iron, B vitamins, and so on. I also want to be taken seriously for once in my life! I really am glad that your doctor acnowledges the damage in your intestines as celiac disease. You will be able to get on the gluten-free diet and get healthy. I am glad you are hear. Thanks for the words of encouragement.

God bless.

Mariann

[Guest Addicted2Gluten]

Hi,

I just started my gluten challenge today. A little over a year ago I was experiencing almost all the symptoms which go along with Celiac disease and tested positive on one blood test but negative on all the others. My doctor told me that I didn't have celiac disease and refused to do a biopsy. So, I then decided to go to a alternative health doctor. They claimed that I either had celiac disease or non-celiac gluten enteropathy. So, I went off gluten and started to feel better. Although, I did continue to have some stomach problems which could be related to another disorder that I have been recently diagnosed with. Then after being off of gluten for about 4 months, my gastroenterologist said that he wanted to do a biopsy of my intestine to confirm that I had celiac disease. So, he told me to go back on gluten for 5 days! I did what he said and then underwent the biopsy which showed that I didn't have celiac disease. That summer I went to the Mayo Clinic which claimed that being on gluten for 5 days would show nothing even if I had celiac disease. Now, I have a new gastroenterologist who just started me on gluten again yesterday and told me to stay on it for two months (until April). So, I just started this diet today and have eaten a piece of bread, a bagel, and pasta today. So, far I haven't experienced stomach-aches yet, but I'm afraid that they are going to start up again. I'm a vegetarian and I'm lactose intolerant and allergic to corn as well, so avoiding gluten products is hard. Although, I completely avoided gluten for a year and a half. But, I must say that gluten-free dairy-free products are disgusting and although there a few that are tolerable it doesn't make for a varied diet. So, I'm really hoping that I don't have celiac disease. But today I did experience two weird symptoms which may or may not be associated with the gluten I ingested today. I've been extremely thirsty (and I'm usually never that thirsty) and I've done 5 bowel movements within about 5 hours. The reason, I'm thinking and hoping for those symptoms, could be because I had a barium endama (sp?) done yesterday. So, when do symptoms usually start (how far after ingesting the gluten) and which ones seem to come first?

Thanks in advance.