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Cara in Boston

Two Random Questions

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I've been very focused on Celiac Disease for the past couple of months because it looks like my son and I may both have it. He has only had blood tests, so we are not that far along with him. I had a (very) positive blood test, then a negative one (after 10 days gluten-free) and a negative biopsy (also after 10 days gluten-free). I am now supposed to eat gluten for a minimum of three months at which time they will do another blood test.

I had never heard of celiac disease before my son had his blood tested but after learning about it I find that I have many of the symptoms. Things I have been to various MDs for, all with no real resolutions. (Symptoms include GERD, dizzy spells, anxiety, heart palpitations, tingling in hands, frequent diarrhea, frequent headaches, etc.) I had NONE of these issues up to about 5 years ago (when I had my son, coincidently).

My first question is this, what exactly causes the symptoms, the gluten or the damage to the intestines? Would I have these symptoms if I have "latent" Celiac Disease and have not yet had any damage done? Obviously issues with malabsorption (which I don't seem to have) would be caused by the intestines not being able to do their job, but what about the other stuff? Anybody know the mechanics of this?

The second question is this (sorry if it is TMI): What do you consider diarrhea? When the MD asks me about the frequency of this problem, I'm not sure. I consider it to be diarrhea when I have to RUSH to the toilet and it is very watery. I usually feel sort of ill. But then, again thinking back to the "good ol days" when I had no problems at all, it occurred to me that I haven't had what could be described as a "solid, formed BM" in years. Now, on a good day, everything is either soft and mushy or in lots of small pieces. I eat very healthily, and get lots of fiber. All along, I knew that wasn't the ideal, but I just thought I was getting old or something.

I can't believe the last several weeks (and possibly the next three months) I have been consumed with thought about my intestines and my bathroom habits. My husband thinks I'm a bit crazy.

Anyone have any insights on these two questions?

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I've been very focused on Celiac Disease for the past couple of months because it looks like my son and I may both have it. He has only had blood tests, so we are not that far along with him. I had a (very) positive blood test, then a negative one (after 10 days gluten-free) and a negative biopsy (also after 10 days gluten-free). I am now supposed to eat gluten for a minimum of three months at which time they will do another blood test.

I had never heard of celiac disease before my son had his blood tested but after learning about it I find that I have many of the symptoms. Things I have been to various MDs for, all with no real resolutions. (Symptoms include GERD, dizzy spells, anxiety, heart palpitations, tingling in hands, frequent diarrhea, frequent headaches, etc.) I had NONE of these issues up to about 5 years ago (when I had my son, coincidently).

My first question is this, what exactly causes the symptoms, the gluten or the damage to the intestines? Would I have these symptoms if I have "latent" Celiac Disease and have not yet had any damage done? Obviously issues with malabsorption (which I don't seem to have) would be caused by the intestines not being able to do their job, but what about the other stuff? Anybody know the mechanics of this?

The second question is this (sorry if it is TMI): What do you consider diarrhea? When the MD asks me about the frequency of this problem, I'm not sure. I consider it to be diarrhea when I have to RUSH to the toilet and it is very watery. I usually feel sort of ill. But then, again thinking back to the "good ol days" when I had no problems at all, it occurred to me that I haven't had what could be described as a "solid, formed BM" in years. Now, on a good day, everything is either soft and mushy or in lots of small pieces. I eat very healthily, and get lots of fiber. All along, I knew that wasn't the ideal, but I just thought I was getting old or something.

I can't believe the last several weeks (and possibly the next three months) I have been consumed with thought about my intestines and my bathroom habits. My husband thinks I'm a bit crazy.

Anyone have any insights on these two questions?

Celiac is an autoimmune disease. When you eat gluten that causes the antibodies that you were positive for in the first test. Celiac usually has a trigger which for women is often childbirth so it makes sense that you noticed the symptoms after you child was born. The autoimmune activity can attack any organ in the body including the brain in addition to the more typically thought of gut symptoms.

The villi if not totally destroyed can have a quick recovery rate and the antibodies would stop being formed after you quit eating gluten. That could account for the negative tests after you had been gluten free for a short time.

The damage can also prevent our bodies from utilizing and absorbing B12 from our diet or swallowed supplements which could be why you are having the tingling sensations.

While it can take some time to heal even after just ten days gluten free your body may strongly react to your adding gluten back in. Some of us become to ill to complete a full 3 months. Your positive blood work and reaction to adding gluten back in, or your recovery from symptoms off it, would be diagnostic with some doctors. There are still doctors that will not diagnose unless the villi biopsies are clearly positive and since biopsies and blood work can both have false negatives it can be hard for us to know what to do. After you are done with all testing do try the diet for yourself and you little one for at least a couple of months. Sometimes our bodies can tell us what the doctors cannot.

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i think its very possible you are having malabsorption issues- you dont have to be having a lot of pain, or have fatty bms to have the malabsorption- in fact many of your symptoms can be from malabsorption. the tingling in the hands.. the anxiety, etc.. sound like you're developing a B12 deficiency.. which is very common in people with gluten intolerance

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