Prep For Blood Testing

[kaylee]

Hi everyone,

I have already written in about my son, and now it's for my husband that I have questions (questions about me will undoubtedly come soon!)

My husband is going to get himself tested for celiac because after we all went gluten-free due to our son's need, he, my husband, was amazed to find how much better he felt after a week or so. His chronic and sometimes severe fatigue disappeared.

He was gluten free for 5 weeks in total. Now he has gone back to consuming it in order to have the blood work done and it has been 3 weeks so far.

My question is this: how long is long enough to be back on gluten for valid test results? I have read various things and at the least it is clear that there are individual differences, so this is not an exact science I know. I have heard 4-6 weeks mentioned, but it is not clear how long people have been gluten-free prior to that, to make those number of weeks necessary to be back on gluten, if you see what I mean. Since he was only gluten-free for 5 weeks, perhaps it is not necessary to draw the ordeal out? The bottom line is, although he hates being back on the stuff he is also concerned that the test results be as accurate as possible.

ANy insight would be highly appreciated. Thanks,

Kaylee

[Jala]

I have the same question. I have been totally gluten free for about a month, and sporadically gluten free since the beginning of the year. I am now dreading the weeks that I will need to eat gluten. Worse yet, if I don't eat enough, they could misdiagnose me as non-celiac.

I have been told that you must eat wheat from 2 weeks to 4 months. However, I have also been told that 2 weeks is not enough and could give false negatives. I had planned to go 5 weeks, but would welcome input from others.

I don't know if I can take it. I get severe IBS, can't do my work and have even had heart palpitaitons and shortness of breath. Some threads have indicated that the symptoms will be worse if you have been off gluten for a while and go back on. This is not going to be fun.

Any suggestions? Jala.

[Jala]

After 5 days of eating wheat - so far so good. I am enjoying all the wheat items I had been avoiding for so long - pizza, bagels, oriental noodles, petit fors and french rolls (I'm doing pancakes, chips & dips and chicken fried steak w/ cream gravy this weekend). I figure if this is a last hurrah I'm going to do it big, plus this will help to assure my tests get some additional reinforcement.

All these forbidden foods were fun at first, but I was already constipated after only 2 days (but no severe pain or diarrhea yet). I have also inflated like a balloon and have gained a lot of weight. I am hoping to stay on wheat for 5 weeks only. For those of you avoiding wheat and longing for it, let me tell you. It is not all I hoped for. You are not missing anything. Wheat free food tastes way better, and I feel better eating it. I can't wait until this is over.

I believe I am also probably sensitive to soy. When I went gluten-free and ate the soy waffles, I immediately got diarrhea and severe acne clusters. Anyone know what all the GI can test for during the colonoscopy? Soy, peanuts, lactose, etc.?

Also, I was wondering if most peoples' symptoms after not eating wheat and then eating lots of wheat is this subtle. I expected power diarrhea right away, but feel pretty good so far. Is this typical of celiacs?

[gf4life]

Hi Jala,

Don't worry the diarrhea will come. I had to do a gluten challenge over the holidays last winter. It made the eating part of the holidays much simpler, but I did not enjoy it because I felt so bad. I was like you, I started with the bloating and constipation, but the diarrhea did eventually happen. I was back on gluten for 8 weeks, and I still tested negative on the biopsy.

Make sure your doctor checks the cellular level of the samples, and not just the villi. If the villi are not flattened or just look slightly abnormal, then they need to count the number of intraepithelial lymphocytes. Most doctors do not do this. It has to be specifically ordered at the time the biopsies are sent to the lab, but without it, if the villi are not damaged enough then the test is not going to give you accurate answers. I found this out too late to help me, but hopefully it will help you. It is called a CD3 stain and anything over 20 intraepithelial T-lymphocytes / 100 mucosal cells is damage consistent with Celiac. Please ask your doctor to do this before the biopsy, so that they have time to find out what to order if this is not standard procedure for them. And then make sure they do it! Other wise you are suffering for no reason right now.

God bless,

Mariann

[Thomas]

Good luck,

[kaylee]

Yes - the more input the better! And, the more I read the more it appears that there is no one description of someone with celiac disease. That must also be why there are such varying suggestions from the technical and medical professions about how much gluten is sufficient for valid test results. Like you, Jala, my husband had decided to do 5 weeks (which, in his case, was a crafty compromise between the 4 and 6 week suggestions he'd heard - but still pretty arbitrary), and that may just not be good enough from what others have experienced. Obviously, a personal decision has ti be made at some point!

Best,

Kaylee