Gluten Challenge And Tests

[across]

I have been gluten free for six months after trying an elimination diet for my interstitial cystitis, and have experience profound changes in my health and in multiple disease symptoms. As a result, I decided to ask my doctor about being tested for celiac.

 

After reviewing my symptoms, he agreed that I am definitely gluten-intolerant, and told me he thought there was about a 50% chance that I was celiac, and that he wanted to order a blood test. I had done some research before asking him about this, and knew that the blood tests required a gluten challenge in order to be accurate. I asked him twice about the gluten challenge, and he assured me that the tests would come back positive even without doing one if I had celiac disease. I had the tests (sorry, don't know exactly which ones), and they came back negative.

 

Prior to the test, I had eaten some gluten for about three weeks as a result of an extensive plumbing repair (it was hard to fix meals with no water, so I was eating out). So basically, I was six months very strictly gluten free, followed by three weeks of some gluten -- perhaps every other day or so. I was miserable by the end of those three weeks! I'm still dealing with symptoms from that!

 

I really don't know what to do now. I know I would have an extremely hard time handling a longer gluten challenge, and I don't trust the tests I have had. 

 

Has anyone done the gluten challenge and found it worthwhile to get an official diagnosis? My husband is supportive, but my extended family definitely doesn't understand this disease, and is very unsympathetic. They know I had the tests done, and now they'll pretty much think I'm a hypochondriac if I try to get more testing done since the ones I had came back negative. Heck, they were pretty much insinuating that celiac disease itself was a malady for hypochondriacs. Ugh!

 

I'd really appreciate your thoughts and suggestions. I'm at a loss to know what to do next.

 

 

 

 

[GF Lover]

Hi across, and Welcome to the Forum.

 

The tests you had really told you nothing.  A gluten challenge needs to be 8-12 weeks.  Since Celiac is an autoimmune disease it takes time for your immune system to ramp up.  Family is family....don't worry about em.  Worry about your health.  If you can't manage a full gluten challenge then you may want to just go gluten free and enjoy the benefits you've already seen.  You fall into the category of may have it or may not.  I would choose the "may have it" and eat appropriately.  If you do in fact have celiac then you would be damaging your body by eating glutinous food.  The diet is not a big hardship and is healthy.

 

Good luck to you

 

Colleen

[nvsmom]

There are very few people around here who had their celiac disease caught the first time they went to the doctor about it. I think hypochondriac is synonymous with celiac disease.

 

I'm sorry your doctor was so misinformed. If a diagnosis is important to you, and you can handle 2-3 months (12 weeks is best) of gluten, then I say go for it. If it's too much, then skip it and go back to strictly gluten-free.  

 

If your family is giving you a hard time, you can stretch the truth a bit.  Saying, "I was tested. It looks like celiac disease," is basically the truth. If they are still not supportive, you'll just need to work around them and bring you own food to family functions.... Most of us end up doing that anyways as very few people really understand the extent we have to go to make safe food. For example, my SIL made gluten-free cookies but she used butter and sugar that was not from a dedicated gluten-free container so I sadly had to skip them - she had good intentions but it wasn't safe enough for me to risk it.

 

Best wishes and welcome to the boards.  

[BlessedMommy]

Hi and welcome to the boards!

 

I'm sorry for the hassle that you're going through. It's entirely up to you as to whether to do a gluten challenge or not. 

 

If you do a gluten challenge, make sure that you don't overdo the gluten. Eat a mostly gluten free diet and then add something like one grilled cheese sandwich a day or so. I tried to go cold turkey to eating normal and had very serious complications and wound up in the hospital 10 days into my gluten challenge. I've been gluten free ever since that day.

 

Good luck with whatever you decide!

[across]

Thanks, all, for your welcome and words of wisdom. I appreciate it!