How Can I Feel Better Before My Biopsy?

[luvmydogs]

My antibody tests came back positive for celiac, but my gastroenterologist is taking his sweet time in making an appointment for me. I'm not scheduled for a consult until January, and then I'm guessing it will be another month or so until the biopsy.

I know I can't go gluten free yet or the biopsy will come back false negative. In the meantime, is there anything I can take or do to help relieve the constant cramping and fatigue? So far, lots of coffee. My work is really suffering, I can't concentrate, and I'm in constant pain.

[happygirl]

luvmydogs,

if you are going to get a biopsy, I suggest you calling your doctor and talking to the nurse and explaining the situation. Usually they will work with you to get you in if they know its a problem. They often say they can't....but they really can. It might be worth a phone call, ya never know.

you are correct that you can't go gluten free until after the biopsy. some on here will say that the bloodwork is indicative enough, and if you want to feel better, don't get the biopsy and just go gluten free. That is a personal decision, and one that your doctor won't like . But, it is *technically* an option. Many want a biopsy, and in truth, in general, having a positive biopsy does make things easier. (I'm not advocating .... I'm just presenting options).

The only thing I can recommend is to take immodiums. That was the only thing that helped w/my cramping and d. Let yourself sleep a lot. My fatigue didn't lift until I had been gluten free for months, bc I had been so sick for so long. It taught me to say no to things! I wish I could be of more help, but there just isn't much to do to solve the symptoms, if the symptoms are caused by gluten, the "fixer" is to go gluten free. Take care of yourself!

Laura

[mn farm gal]

I myself would just take that Positive blood test as your answer. It is kind of like either you have it or you don't. Its positive.

I have read it on this board before you are either pregnant or not you can't be a little pregnant.

Good luck!

[mamabear]

You can try and override any malabsorption with mega dose vitamins and minerals. Be sure there is high dose B complex;folate;C;calcium/magnesium,and a general multivitamin. It doesn't always work if there is too much villous damage. But sometimes this will help some of the fatigue, and it won't affect your biopsy results. A good health food store should have these for you and be sure and ask for gluten free. No reason to add gluten in vitamins to your already "normal" diet. I agree there are often extra office visits available, but endoscopies are harder to get at the end of the calendar year. Frequently the schedule is booked for these procedures by November, but there may be cancellations and hopefully the nurse will become your advocate and get you to the top of the list.

[luvmydogs]

Thank you all for your great suggestions. Right now I'm taking vitamins, sleeping a lot, and I have found that white wine calms my stomach cramps completely. Of course, I can't use that remedy at work!

[Fiddle-Faddle]

Something else to consider is the fact that people on this board have been denied insurance because of positive biopsies. If you already know that gluten is the cause of the problem, then a biopsy only makes the doctor and insurance company richer; it doesn't necessarily tell you anything that you don't already know, as, unless your villi are uniformly damaged, it all depends on which patch or patches they biopsy.

[luvmydogs]

Something else to consider is the fact that people on this board have been denied insurance because of positive biopsies. If you already know that gluten is the cause of the problem, then a biopsy only makes the doctor and insurance company richer; it doesn't necessarily tell you anything that you don't already know, as, unless your villi are uniformly damaged, it all depends on which patch or patches they biopsy.

That's very scary, FF. So what you are saying is that it then becomes a pre-existing condition and won't be covered if I change insurers? Perhaps better to not get the biopsy and just go gluten free?

[Canadiangirl]

Hi there,

Since there seems to be some knowledge here, I am a BC resident and have not yet had a biopsy but have had 1 posative blood test for gluten when I was eating it and one negative after about a year of not. I have been gluten free for about 3 years and get so so so sick when I eat even a wee bit of gluten (as you all can relate to). I have great medical with my job, and I have heard that one can submit food costs etc. with taxes. Is this true? If so do I need to have the boipsy to "proove" that I have celiac? And in that case I have had several doctors suggest i just suffer and eat gluten for a few days or weeks to get the offical biopsy, I cannot imagine how horrifically ill I would be. How long do you have to be eating gluten for for this test to be worth it? ( Can you imagine eating gluten for a time and being that ill and then having it not be posative!?!) Experience? Thoughts?

Canadian Girl

[Jestgar]

In the US I believe you can deduct the added cost of your gluten-free food from your taxes, but as a "medical expense". This means you must spend more than 7.5% of your income on medical expenses before you can start to deduct it. Pretty hard to do, unless you already have an expensive medical condition.

[happygirl]

luvmydogs,

the insurance issue is usually only for private insurance (i.e., not through an employer). I had Insurance #1 when I was dx'ed, moved/changed insurance to insurance #2, and just changed jobs and i'm on insurance #3, all through employer plans (i think mine have all been some variation of a bc/bs plan), and i have not had problems with any. so, it is more to consider if you have private insurance (generally).

hope that clears it up.

Laura