Can An Endoscopy / Biopsy And Blood Test Not Show Celiac When You Do Have It?

[kak113]

My mom has been suffering for quite a few years now with no helpful diagnosis, except for IBS.

She is 56 and does nto have a great diet - eats peanut butter with crackers 2xs a day, drinks caffeine-free soda, regular coffee, no water, and has a semi-normal meal but does not really eat many veggies.

her symptoms are many of the same as listed on this site - huge loss of weight (she is now 5'4" and weighs 90 pounds) yet still bloated in the stomach, and goes between constipation and diarrehea. She can't gain weight even with Ensure shakes an eating all the chocolate she wants. She is barely able to leave the house.

However, she's had all the tests you could possibly think of but there is supposedly no sign of celiac, although her sister has been diagnosed with it.

Is it possible that certain drug interactions can mask the effects in a blood test?

Any and all thoughts are welcome. i would just like for her to feel better, but seeing many specialists is not helping.

[Ursa Major]

Yes, the blood tests are not terribly reliable, and the biopsy can miss the damaged spots. It is entirely possible to have negative tests and still have celiac disease. Those tests can only rule celiac disease in, but can't rule it out.

My suggestion would be for her to try the gluten-free diet, especially because her sister has celiac disease. If she improves on the diet, then I would think that would be enough for a diagnosis. Her symptoms certainly are a match for celiac disease.

I hope you can get her to try the gluten-free diet and come out of denial!

Also, IBS is a crap diagnosis. All it means is that the bowels are irritated, and the doctor hasn't got a clue why and has given up on finding out. There is a REASON for those symptoms!

[tabdegner]

I believe I am one of those people who has celiac, but had all negative tests, including the biopsy. (Read my signature below for my history).

I went gluten-free 2 1/2 months ago. And PRESTO, ALL my symptoms went away within a week. I believe that the biopsy was done in the very early stages of the disease and probably missed the damage. And I know my labs were not sent to a good lab.

A friend of mine also had the same negative tests, but is celiac. She went in to one of the big guys in Chicago for a second opinion. He looked at the biopsy and said that whoever took the biopsy cut it wrong. Apparently with a celiac biopsy you have to cut it differently than a regular biopsy. He said he could almost see the damage, but it was cut wrong, so it was very very hard to see.

Have your mom try a gluten free diet and see what happens. There is NO harm in doing that.

For my own sanity, I am going to do the gluten challenge starting tomorrow. I waited until school was out for my kids -- I don't want to be really sick and have to take them and pick them up from school... We're eating at an Italien restaurant tommorrow night -- probably for the last time. But I'm so glad that I just tried the diet -- I feel SOOO much better!!!

[mouse]

I hope you know that to do the gluten challange that you have to be comsuming gluten, equivilent to 3 to 4 slices of bread every day for a total of 3 to 6 months. Several on here have tried it and quit as they got so sick that they could not handle it.

I was like Kak113's Mom. I suffered for about 30 years until I lost 53 pounds and got far below what my dream weight was. Finally a GP thought of Celiac and the blood test came back positive. I was close to dead and according to the GP, another 2 weeks and I would not have had any recovery. He never mentioned a scope and I could never had handled it at that time. I was dehydrated and bedridden. I went gluten free immed. and never looked back.

I hope Kak113 can get her Mom to try the diet. I wish I had known about Celiac when I was 56. It would have made a big difference in what my life has become. I was diagnosed right before my 62 birthday and 6 years would have made such a difference in recovery.

I was also told by a GI doctor at the Mayo that I could not have Celiac as I did not have a scope. No way was I going to consume gluten for that doctor. He was a nice man, but we need to look out for our own interests and not the interest of an unknowledgable doctor.

[lob6796]

My mom has been suffering for quite a few years now with no helpful diagnosis, except for IBS.

She is 56 and does nto have a great diet - eats peanut butter with crackers 2xs a day, drinks caffeine-free soda, regular coffee, no water, and has a semi-normal meal but does not really eat many veggies.

her symptoms are many of the same as listed on this site - huge loss of weight (she is now 5'4" and weighs 90 pounds) yet still bloated in the stomach, and goes between constipation and diarrehea. She can't gain weight even with Ensure shakes an eating all the chocolate she wants. She is barely able to leave the house.

However, she's had all the tests you could possibly think of but there is supposedly no sign of celiac, although her sister has been diagnosed with it.

Is it possible that certain drug interactions can mask the effects in a blood test?

Any and all thoughts are welcome. i would just like for her to feel better, but seeing many specialists is not helping.

If her diet is that minimal, she might not be eating enough gluten to show up on the tests. Enough to make her feel like crap, but not in high enough doses for the tests. She might try eating alot of gluten and then getting the blood tests redone.

[chatycady]

I am 51, I have all the symptoms, but all my tests were normal. During one of the Dr's visits he suggested he thought I had Celiac. I decided to check it out and start the diet. Within 48 hours I saw an improvement, so much so, that I chose to continue with the diet.

From what I have read, celiac is only one of many subsets of "gluten intolerance". Some Dr's believe that eating gluten can cause the immune system to attack other parts of the body. Only celiac can be diagnosed at this time. Other Dr's. think flattened villi are the "end stage" of celiac disease and many go undiagosed until they are really really sick.

So, get your mom on a better gluten free diet. Ditch the crackers and peanut butter and start simple with foods that are not likey to cause an allergic reaction.

I recently read that many menopausal or soon to be menopausal woman have trouble with wheat.

Take care. I hope your mother gets better. But please stop those crackers unless they are gluten free.

This website is full of good information.

Chaty