? For A Friend

[mrsnj91]

I know the answer to this but I wanted to see what you all thought....

My girl friend mother has been very sick for years. She often throws up after eating and has GI problems including consitpation and diarrhea. Her stomach is very swollen and she also has other problems like headaches and joint problems. She just had surgery for adhesions (sp) of unknown causes. She has had MRIs and x-rays. Scopes up and scopes down although I am not certain what they were looking for. They did a blood panel for Celiac on her and it was neg. My girl friend doesnt' know if they did a gene test. I mentioned how many on here have had neg. results. Her daughter also throws up after eating and has been diagnosed with IBS. I know....I know.....BUT do you think it could be something else? Another medical problem or maybe an allergy to something she is eating. Would an allergy cause the swollen belly?

Here is a sample of food she ate and then threw up....

grilled chicken

broccoli

sweet pot.

I asked if she had any bread, seasonings, etc and she (my gluten-free) wasn't 100%. Just said it was soaked in italian dressing and grilled. That however doesnt' tell me what she ate all day prior too or how the meal was cooked.

So my 1st question is: Could it be something BESIDES Celiac and what should we look for?

#2: Please explain how the tests can be wrong so that I can better explain it to her.

#3 What could have been used on that meal above that might have made her sick?? (assuming that was all she ate)

BTW My girl friend doesn't have any problems but she is adopted.

[mrsnj91]

42 views and no advise?? I am new to this. I can give my opinion to her but I am not certain I would be right!! No one wants to help?

[Carriefaith]

I would ask her what blood tests that she had done. I have heard that some people with celiac disease are deficient in IGA antibodies; therefore, their IGA tests would come back false negative when they were eating gluten. Doctors usually administer the test(s) that detect IGA antibodies. Maybe suggest that she ask her doctor for this celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Also, maybe she could have a celiac gene test done.

In addition, she may not have celiac disease. Has she been tested for food allergies and/or intolerances? I just had one blood test done in February that tested for about 30 different food allergies. The test was quick and simple.

[happygirl]

MrsNJ-wow, that must be tough on your friend's mom. I can symphathize with not knowing what is going on and getting sicker and sicker.

Couple thoughts ran through my mind....if there is something else going on, I have no idea what it could be. A parasite or bacteria? What about something like Crohn's or ulcerative colitis? An allergy? Has she had any allergy testing? (I am not very familiar with allergies so I don't know what types of reactions could be occurring.) Or what about a casein intolerance?

In terms of gluten...I'm sure there are varying opinions here. I wonder which tests they ran (the partial panel or the full panel). Sometimes, they only show up on certain, more specific tests and they are often not run. And, although she has had scopes, if they aren't taking multiple site biopsies, they won't know if it is Celiac or not.

The other thing---that sticks out to me---is if it is (and I certainly don't know!) a gluten-related problem, eating almost anything might cause digestive distress, even if the food is gluten free. She could be so damaged that her body can't process anything correctly, ya know? It is hard to tell because I know that I personally want to diagnose everyone with Celiac ... but obviously, everyone with complaints does not have Celiac. But, on the otherhand, this disease is way under-diagnosed. So go figure.

She might want to look into eliminating certain foods...but usually one at a time. I think there are people on here who are knowledable about how to go about eliminating foods, for how long, etc. If she isn't finding relief from doctors, it might be worth it to try going gluten or casein free (or something else free).

Hope this gets you thinking..... Let us know what you think and what her mom is thinking/doing.

[Guest Robbin]

If they had all the tests, I would suggest that they try completely gluten free and see how that makes them feel, or just check out enterolab.com and order the tests and get some definitive answers. It could also be dairy, or soy problems. They can be as problematic for some people. They really should keep a detailed food list/diary and try to find a pattern. Check out what the ingredients were in the Italian dressing as well. Hope this helps. Keep us posted

[mrsnj91]

Thanks!! I'll give her a copy of those tests. I have no idea what exactly she had done on the test as my girl friend wasn't certain. I told her to just try a gluten-free diet. She says she won't unless there is cause. You know....too much work! We have heard that all before. I told her it certainly can't hurt. I did suggest the food diary. I do that with my children and it really helps.

I also explained that it could be an intollerace and that wouldn't show on a Celiac panel but have similar symptoms. I gave my girl friend this site and told her to check out the info on here so hopefully she might find something that will help.

I will also mention those that you mentioned Laura. I didn't think about Crohn's and somewhere I have info on that. You made a good point .....

The other thing---that sticks out to me---is if it is (and I certainly don't know!) a gluten-related problem, eating almost anything might cause digestive distress, even if the food is gluten free. She could be so damaged that her body can't process anything correctly, ya know? It is hard to tell because I know that I personally want to diagnose everyone with Celiac ... but obviously, everyone with complaints does not have Celiac. But, on the otherhand, this disease is way under-diagnosed. So go figure.

It is hard to say without all the info but I honestly think she needs further tests and another opinion. She is going for another opinion so maybe this dr. will take it further. We deal with allergies in my house but a swollen stomach is not one of those symptoms. And the fact that her bio. daughter is having the exact same problems and throws up after eating and has IBS.....That leads me to believe Celiac. That would be just too much of a small world for them both to have the exact same allergy and have the exact same problems. KWIM?

Here is a question...IF she went gluten-free how long do you think she would start feeling better after starting it? It that something to happen fast or would it take a long time??

And another.....When she went for the Celiac panel would she not have to overload on gluten for it? Or would a piece of bread here or a piece of toast in the morning, for example, work? I question if she took the test properly.

[Guest nini]

I have a celiac friend IRL who can't eat sweet potatoes...

[Carriefaith]

Here is a question...IF she went gluten-free how long do you think she would start feeling better after starting it? It that something to happen fast or would it take a long time??

And another.....When she went for the Celiac panel would she not have to overload on gluten for it? Or would a piece of bread here or a piece of toast in the morning, for example, work? I question if she took the test properly.

Most people start to feel better on the gluten-free diet within 3-4 months. She wouldn't have to overload on gluten, but she should be having more than 2 servings of gluten per day in order to make sure that the tests are not false negative.