Questions! Any Thoughts< Suggestions? Daughter Now Having Symptoms!

[camsmom]

Hello

I have never posted here before. I will give a brief description of what has happened to me and then explain what is happening with my daughter.

I began having horrific diarrhea after my appendix were removed over a year ago. I then had my gallbladder removed due to it becoming infected from my appendix being removed. I am (or always have been) very healthy! I am 5'5 118 pounds. My diarrhea became chronic and my stomach pains became horrific and never went away. I had numerous ct scans, stool cultures, everything was negative. I had a colonoscopy done in December and it was negative for everything! The diarrhea continued all the way up until May and then all of a sudden it stopped when I got an ear infection and was put on penicillan!!! Penicillan is suppose to cause diarrhea and it did the opposite. I have this problem occasionally now but not like i did! The gi docs cannot figure out what is going on and I have a VERY GOOD doc. My celiac panel was negative, the only thing was the immunoglbulin A was low at 35. I still have stomach cramps and pains. I don't feel great. I am hoping they figure this out. I am tempted to just go gluten free on my own.

So, NOW, my 4 year old daughter is having the same issues that I was having. I am thinking this is NOT just coincidental! At first I thought she just had a stomach bug, but it keeps happening and it has been going on and off now for a few months. i took her to her pediatrican and he ran blood tests and they all came back normal and her celiac panel was negative. I did not see what her immonglobulin a serum was at. I will get a copy of that from the lab. Her stool cultures have not come back yet. We have not gone to a GI doc yet, that will happen in the next few weeks. I am thinking she will end up being a mystery like me, but, I cannot have my poor little 4 year old complaining of a stomach ache every day!!! She is still hungry, still eating, but massive diarrhea!!! stomach hurts all the time!!!! she has not lost any weight but she is very irratable all the time and this is not normal for her.

Help?????? suggestions? anyone else been in the same situation with both mom and daughter?????

[ravenwoodglass]

My celiac panel was negative, the only thing was the immunoglbulin A was low at 35.

If that was your total IGA then you are IGA defiecient and the blood test could be a false negative.

Has your GI suggested or done an endo on you? It doesn't sound like he did.

There are some of us that just don't show up in blood work. You may be one of those. You could go on the diet and see if it helps or you can go back to the GI and ask for an endoscopy. If you are going to try and get him to scope you need to keep eating gluten until that is done. You do need to know that there are also cases of false negatives even with the scope. It is up to you whether to pursue more testing or whether to give the diet a shot first.

[Foxfire62]

Hello

I have never posted here before. I will give a brief description of what has happened to me and then explain what is happening with my daughter.

I began having horrific diarrhea after my appendix were removed over a year ago. I then had my gallbladder removed due to it becoming infected from my appendix being removed. I am (or always have been) very healthy! I am 5'5 118 pounds. My diarrhea became chronic and my stomach pains became horrific and never went away. I had numerous ct scans, stool cultures, everything was negative. I had a colonoscopy done in December and it was negative for everything! The diarrhea continued all the way up until May and then all of a sudden it stopped when I got an ear infection and was put on penicillan!!! Penicillan is suppose to cause diarrhea and it did the opposite. I have this problem occasionally now but not like i did! The gi docs cannot figure out what is going on and I have a VERY GOOD doc. My celiac panel was negative, the only thing was the immunoglbulin A was low at 35. I still have stomach cramps and pains. I don't feel great. I am hoping they figure this out. I am tempted to just go gluten free on my own.

So, NOW, my 4 year old daughter is having the same issues that I was having. I am thinking this is NOT just coincidental! At first I thought she just had a stomach bug, but it keeps happening and it has been going on and off now for a few months. i took her to her pediatrican and he ran blood tests and they all came back normal and her celiac panel was negative. I did not see what her immonglobulin a serum was at. I will get a copy of that from the lab. Her stool cultures have not come back yet. We have not gone to a GI doc yet, that will happen in the next few weeks. I am thinking she will end up being a mystery like me, but, I cannot have my poor little 4 year old complaining of a stomach ache every day!!! She is still hungry, still eating, but massive diarrhea!!! stomach hurts all the time!!!! she has not lost any weight but she is very irratable all the time and this is not normal for her.

Help?????? suggestions? anyone else been in the same situation with both mom and daughter?????

The only way to know 100% is to have a biopsy of the small intestine; you could still have a negative panel and have celiac disease. If that has yet to be done, I would recommend it.

Another thing that could be happening is that you might have bad bacteria in the gut, or you could have bacteria that should be in the colon interfering w/bacteria in the small intestines (bacterial overgrowth). If you have Bacterial Overgrowth, a simple hydrogen breath test should be able to reveal that for the most part, and it's easy to resolve by giving antibiotics.

What about mast cell disease? Were you checked for that? Leaky gut? Just a few other options to consider. Ulcerative Colitis? Crohn's disease?

I'm not sure what you might have, but you might be able to help your daughter if you, yourself, were helped. Again, although a blood panel is useful, it can produce negative results, and you could still have celiac disease.

If you opt out of not doing the biopsy, then you would have to assume you have celiac disease and remain on a strict gluten-free diet. The same for your daughter.

And, lastly, although your doctor may be very good, if he told you you were negative for celiac disease without recommending doing a biopsy, you need to change doctors and find a celiac disease specialist!