How Long Should I Eat Gluten Before Being Tested?

[costellosfriend]

Hi all:

I've wondered if I had a gluten sensitivity for years. Mild tummy troubles and insomnia my whole life which cleared up on a low-carb diet. I never really cared enough to go to the trouble of being tested. I'm not a big fan of doctors anyway. Add the fact that I'm obese, so likely to be laughed out of the doctor's office anyway. I just never pursued it. I've been low-carb for over 3 years now and that takes care of that IMO.

Now I have a very specific reason for wishing to be tested and try to settle the question. I have an adult son dx'd with schizophrenia. We tried a brief (1 1/2 week) experiment with a gluten-free diet for him which he said was helpful. Unfortunately he's back in the hospital and being fed gluten. I'm too embarassed to tell them we were in the middle of testing the diet to see if it would help. And I feel quite sure his GP won't test him without classic symptoms of celiac. He's on disability and Medicare and running random tests made be seen as an unnecessary expense.

So... I'm thinking that if I test positive, it might justify testing him. So I'm going to screw up my courage and try to find a doctor who will at least order the blood test without telling me that someone as fat as I am can't be celiac.

Now my question: how long will I have to eat gluten? And how much? Wikipedia says 2 to 6 weeks, one meal a day. But someone here mentioned eating gluten for 2 or 3 months to get ready for the test. I honestly dread that. I recently did a little experiment on myself and found that adding wheat and barley to my diet caused my insomnia to return in about 4 weeks. I was down to 3 or 4 hours a night and was weeping during the day. I'm not sure I can stand to do that for 2 months. On the other hand if I'm going to do this, I'd like to have given it enough time for a reasonable chance at an accurate test.

Any thoughts?

[Dixiebell]

Hi costellosfriend.

Yes, you do need to be eating the equivalent of three to four slices of bread a day for three months. Are you still eating the gluten foods? I might suggest that you get tested anyway and see what the results are. If they are negative you could try to gluten up again and then get re-tested.

Could you take some info the the Dr. to show him that they are related?

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/Schizophrenia-%7B47%7D-Mental-Problems-and-Celiac-Disease/

https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Signs and Symptoms of Malabsorption, Malnutrition, vitamin and/or mineral Deficiencies Associated with Celiac Disease:

At the bottom of this list is Obesity.

Conditions and Disorders Associated with Celiac Disease:

Schizophrenia / Mental Problems and Celiac Disease

I truly hope you find the answers you need.

[costellosfriend]

Thanks, Dixiebell. I think I will begin eating a lot of bread. I just hate trying to convince a reluctant doctor using stuff from the Internet. I know what the reaction will be. Especially when the doctor is as busy as this one. The practice takes Medicaid and Medicare - which is why my son goes there - and they're always overrun with patients.

It did occur to me this morning that I could lie and say that I'd tested positive. Unfortunately I'm compulsively honest.

Since I did a little experiment on myself recently in which I ate wheat and barley for a month or so - to see if the insomnia would return - maybe I won't have to go quite as long as three months. I also wonder if the return of the insomnia is a sign that I've gone long enough on the diet. It took about a month of consistent gluten consumption to go back to the bad old days of sleeplessness.

[katiekay]

Oh wow!!! I can't believe you think you can't have celiacs because you are overweight.

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I am so sorry you have to go through this. I am wondering though if you need to actually get yourself sick in order for him to be tested. I mean your son is already being glutenized... maybe you can just mention that you were noticing improvements in him and just want him to be tested. ...but wait 3 months to make sure you get results. Although can you make decisions like that for him?? I don't know how that works. I am getting so irritated with doctors/medical profession. They don't seem to really know that much about anything but enjoy playing God... me venting, sorry!

[costellosfriend]

Oh wow!!! I can't believe you think you can't have celiacs because you are overweight.

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I don't think that; I fear the doctor will.

I am wondering though if you need to actually get yourself sick in order for him to be tested.

He was just released from the hospital. I mentioned our experiment to the social worker. And my son mentioned the gluten free diet a couple of times at mealtimes. I was thrilled to see "gluten free diet" written on his discharge papers!

I mean your son is already being glutenized...

I had that same thought. He's already full of gluten. I'll have to go through 3 months of gluten eating. Maybe I'll call his doctor on Monday and ask if they're willing to run the test on him.

Although can you make decisions like that for him?? I don't know how that works.

I try to get his input on treatment decisions, but he's pretty confused right now - even taking a fairly high dose of an antipsychotic. He's agreeing to the diet right now, but I have to constantly remind him. He'll want a particular food, and I'll point out that it has gluten in it, so he won't get it.

Meantime I've eaten gluten for two days now. I feel fine. I was pretty fearful about the insomnia coming back, but so far I'm sleeping fine.