Biopsy

[ogrestrength]

My father has had problems for ten or more years but refuses to get tested. To this date, he has never changed his diet. My older sister was diagnosed with celiac sprue post pregnancy about 6 years ago with blood test and biopsy, she "cheats" frequently and contacts wheat all the time. I developed symptoms about 2 years ago and initially took care of the discomfort with prevacid. Later, I tested positive with the blood test but fought the doctors when they tried to do the upper G.I. I left without one being done. I have a lot of pain when I eat products containing wheat. Sometimes within 5 minutes, sometimes within 5 hours. However, it isn't a sure thing. I don't have problems touching breads or crackers ect.. either. I read these boards and second guess my "diagnosis". I frequently eat small amounts of wheat products such as corn or rice chex cereal or a single wheat thin cracker. So I ask, should I get tested with a biopsy or are there different "levels" of intolerance? Are the increased adverse reactions due to length of time g.f.?

[CarlaB]

The longer I've been gluten-free, the more sensitive I seem to it.

If I had it to do over, I would not have tortured myself and my family with the gluten challenge required for the biopsy. It ended up being negative anyway. It probably wasn't long enough, and the wheat was making me so sick, I ate small amounts of it and skipped some days entirely. I ended up getting tested by Enterolab just to be sure I wasn't imagining it all.

You just need to decide whether you need the biopsy to prove it to yourself. If you feel better gluten-free, and have tested positive with the blood test, I'd say you definately have a problem. Would it make a difference to you if the test was negative? It didn't for me; I still knew gluten was making me ill (my blood test was negative, too, but had not taken a gluten challenge prior to it). Since I went to all that trouble and expense, I kind of wish the biopsy had been positive, in some sort of strange kind of way. I understand you thinking you need it for your own peace of mind, I felt the same way.

[Carolann1217]

Hello, I am a new member and have so many questions I really don't know where to start. For one thing, I have had many of the symptoms of Celiac for many years. It goes back to pregnancy 14 years ago. I had major platelet problems during pregnancy and child birth....then within a year was diagnosed lactose intolerant. From there, I can't remember ever really feeling good again. I just thought it was due to the change in my body but I developed all kinds of stomach pains, seemed like no matter what I ate never really sat right. In addition I developed all kinds of allergies and Asthma! Anyway.... fast forward about 11 years or so and I decided to try the Atkins diet to drop 10 pounds before a vacation. Well... I felt GREAT! I couldn't believe it. I haven't felt so good in years. I continued with the low carb diet for the next 2 years, "cheating" on weekends but being very good during the week. I never felt great when I would cheat....but in my head thought it was worth it and it was probably just due to my body not being used to the carbs anymore. Anyway... to try to make a long story short... even cheating only on weekends was still making me wonder about other symptoms. I have ITP an autoimmune disease of low platelets, in addition I am 36 and have very low bone density, I also have MANY of the stomach symptoms listed on all the sites for Celiac. So... not only all that, but my mother has ALL THE SAME THINGS. Not so much the gut issues, but the low bone density and the ITP, which is very unusual. So, we decided to have the blood work done. Her's came out positive, but mine was negative. I believe it was mainly due to my low carb diet for the past 2 years. I wasn't consuming a normal amount of gluten when I had the blood work done, I was still on the low carb diet and only had the occasional weekend cheat.... so, my doctor has recommended the biopsy. Due to the fact that my mother has tested positive through the blood test and I have so many symptoms. My question/problem is.... he told me to eat a "regular" diet for 6 weeks before the test. First of all, what is regular???? I have read so many things, some say a minimum of 2 slices of bread a day, others say 4. Some say minimum of 6 weeks others say 12. My fear is that I will have the test done and it will come back negative due to the fact that it hasn't caused enough damage in the amount of time he has given me. Unfortunately, I can NOT handle eating this way for longer than the 6 weeks. I'm counting down the days at this point...... it has made me feel awful 24 hours a day. Since I can never give my body a break for a day, I never feel good. I am so bloated, have neck and back pain, major stomach pain and almost a feeling of MSG...not sure if anyone can relate...but kind of heart racing kind of feeling. I'm looking for opinions from any of you that have been through the gluten challenge that can help me through this. I'm worried that if the test is negative....that's it and I won't really ever know. Have any of you been through it and if so... how long did you eat the gluten products before your biopsy? And did it come back positive? I truly believe I have Celiac......... but I am one of those people that would really like an official diagnosis. Please help......

[Fiddle-Faddle]

I asked for a skin biopsy because of a DH-type rash. The biopsy came back negative (this might have been because it was done 3 weeks after 1)going off gluten and 2) a 10-day course of prednisone). The fact that it came back negative doesn't bother me so much. What bothers me is that the biopsy sites did not heal well--they itch like mad (4 months after the biopsy!) , and are hardened with quite a lot of scar tissue. They are also still quite red, and if I wear a T-shirt (it was on my arms), people look like they're really grossed out by the sight of my arm. In 20-20 hindsight, I would not do it again. Biopsies don't necessarily heal well--but I didn't know that at the time.

[Guest nini]

I didn't have a biopsy at all, Dr. said it wasn't needed cos my antibodies were sooooo high that there was no doubt, that and the fact that I've responded miraculously to the diet and feel terrible when exposed to even a molecule of gluten, I know for sure I have Celiac. My daughter's blood test was negative but with genetic predisposition (ME) and extremely positive dietary response, We are also convinced she has it as well. In my personal opinion biopsies are irrelevent. They can only confirm the dx IF you are consuming enough gluten IF the Dr. takes enough samples, IF the Dr. takes samples from damaged areas and IF the Lab knows how to read the test results... too many IF's for me. Listen to your bodies, if you feel better off gluten then by all means, stay off gluten. It's that simple.

[CarlaB]

CarolAnn, you sound just like me. I had figured out about carbs causing my troubles, then cut them out, not to lose weight, but because my joint pain would go away. So, after years not eating much wheat, my blood test came out negative. I tortured myself with the 6 weeks, and it still came out negative. I was so sick by the end I could hardly get out of bed. Looking back, I find it almost humorous that I felt it necessary to have the biopsy while it was quite obvious what was making me sick!!! I think we are all conditioned to feel like we need a doctor to tell us we're ill.

I did end up testing with Enterolab because their tests are more sensitive. I also got the genetic testing from them. They didn't tell me anything I didn't know, but I knew for sure it was really a life-long gluten problem, not just an allergy which might allow me to eat some occassionally. It also let me know that all my kids have the genetic tendency to the same problem.

[Nancym]

My older sister was diagnosed with celiac sprue post pregnancy about 6 years ago with blood test and biopsy, she "cheats" frequently and contacts wheat all the time.

Well, it depends on you. Your sister had postive diagnosis and still can't stay gluten free. Some people can go gluten-free without a positive diagnosis, just based on their own dietary testing. What does it take for you to make the changes you need to make? Someone in a white lab coat? Lots of people can't even adhere to the diet with a biopsy.

That was the question I asked myself. Do I know my body better than the guy in the lab coat?