Need Advice - Should I Get A Biopsy?

[efm270]

Hi (warning, kind of long post),

I am new here. I have suspected I may have Celiac disease for a while because I've always had a sensitive stomach, low iron, and general fatigue/"brain fog". My mother has many of the same symptoms, but has done a blood test and small bowel biopsy which both came back negative (but she has IBS). My maternal grandmother, aunt, and two cousins have been diagnosed with celiac disease.

I have had two negative blood tests while not on a gluten-free diet. I decided to try to go gluten-free about 7 months ago, but I've only been really successful the last month and a half. Last night I went over to a friend's house and had some Miss. Vickie's sea salt chips, which are supposed to be gluten-free, but other people were putting their hands in the bowl. I began to feel very uncomfortable and bloated within about 1-2 hours of eating them, and I woke up this morning with terrible stomach pain and diarrhea that has continued all morning (TMI, sorry!). I have had these symptoms before both while on and off the gluten-free diet, but it seems less frequent when I am gluten-free, so it's hard for me to say what the cause was.

I am wondering what I should do now. Could I have gotten the Celiac genes even if my mother doesn't have it? If I get the small bowel biopsy will that tell me for sure? Is there a more accurate method? I understand that I would have to go off my gluten-free diet again to do the biopsy and I am also wondering if it's worth it to potentially make myself sick again. Another issue is that I am now 4 months pregnant and I am worried that if I am Celiac, my baby will not get enough nutrients as long as I'm eating gluten. But if I decide to wait to get the test until after I give birth and am done breast-feeding, we're talking about another year and a half without a diagnosis...

Has anyone here diagnosed themselves as Celiac based on their reactions to gluten but decided not to get the biopsy or had a negative biopsy they know is false? If so, how can you be sure you have Celiac and not something similar like a wheat intolerance? Thanks in advance!

[mushroom]

Hi and welcome to the board. I will give you my story and perspective.

I stopped eating gluten in the hopes that it would help my then diagnosis of rheumatoid arthritis (subsequently changed to psoriatic arthritis). I did not know about celiac disease or celiac testing. I subsequently found this board. The diet did not help my RA, but it did solve many of the GI problems, and I stayed on it. I have a a gluten intolerant sister and a celiac niece, and looking at my whole family, it seems that everybody had very suspicious symptoms. I have no children, but my husband turned out to be celiac (dermatitis herpetiformis). I have had no testing of any kind. I do not need any testing. I know that gluten (and many other foods) are bad for me and do not need a doctor to tell me that. If I were to have a formal diagnosis the only thing that would change in my life is that doctors would stop putting a question mark in front of my diagnosis of gluten intolerance

Celiac is hereditary, but the heredity is a predisposition to develop the diease, not the disease itself. Not everyone who carries the genes will develop it. For most people there is some kind of mental or physical stress event that triggers the development of the disease. Childbirth can be a trigger.

Accurate diagnosis requires you to be eating gluten (equivalent of 3-4 slices of bread a day) for 2-3 months. After a period of being gluten free, if you are really sensitive to gluten, this can make you feel very ill. Normally they will run a celiac blood panel first and if this is positive they will do the endoscopy with biopsies. Sometimes they will do the biopsies even with negative blood work. Sometimes the blood and biopsies are both negative. Sometimes this is a false negative (error rate about 20%). Other times it indicates you do not have celiac disease, but non-celiac gluten intolerance. What is the difference? Officially, the difference is that celiac damages the small intestine and NCGI does not. However, both can cause malabsorption of nutrients and lead to vitamin and mineral deficiencies. If you are pregnant, this is not the time you want to be depriving your baby of important nutrients needed for proper development. I would therefore advise against going back on gluten right now. You have lived 7 months without a diagnosis, you can live for another 12 months for the health of your baby. Once the baby is born and you are no longer breast feeding you can decide then if you want to do a gluten challenge and try to get a diagnosis. But there are no guarantees that you will get a definitive diagnosis. It is really up to you how you proceed. It could be important for your children in the future to knkow if they have the predisposition. But NCGI also has a genetic basis so if mom has symptoms the children may also, whichever it is.

Best wishes for a healthy baby and good luck on decision-making.

[ravenwoodglass]

The only thing I have to add to the reply from Mushroom is that just because your Mom tested negative doesn't mean she isn't celiac or gluten intolerant. Hopefully she has given the diet a good strict try. If she hasn't then please advise her to do so. Testing does miss some of us. I was the most severely impacted in my family and showed negative on testing but both of my children with milder symptoms did show positive.