What To Do- Looking For Advice

[bahrbdoll]

Hi everyone, I am new here and love all the information I have read. I'm not real sure how to do this, but I'd really like some input.. seriously anything at this point would make me feel better! I'm really confused about when this actally started vs. when I realized it. So, I will start where I Thought my problems began-

The end of last October, 5 months pregnant, one night I started having horrible stomach pains (had happened before-had also been to ER before for it-was written off as complications from previous gastic bypass surgery) getting hot then cold, throwing up-thought I was dying. Went to the ER, because of being PG they started with least invasive- After 2 days (almost literally dying) they fixed a major bowel obstruction. Since and some before- I litterally have like every symptom i've seen associated w/ celiacs. That was the begining or so I thought.....

So, this is what I have accomplished since my bowel obstruction surgery last october-

2 week follow up w/ surgeon checked for some bacterial poop issues told everything fine

within a month complaining to OB about chronic diarrea- told it will take a while for system to get back to normal

continued to complain- started loosing hair they found and treated for campylobacter

diarrea didn't get better litterally going over a dozen times per day not gaining weight while PG

after beautiful Darbie born in Feb Healthy dispite everything I was going through

Finally, now they could do more tests

- 2 NEG blood tests for celiacs

- upper and lower GI's -nothing

BUT -Big But - He couldn't biopsy the part of the small intestine they normally would because that is the part of my small intestine that is bypassed from when I had my gastric bypass surgery done.

So, I was put on a gluten free diet it's 2 months now, things seem to be slowly improving? lots of med changes too.

still finding gluten in crazy things been trying my best. So here are some of my questions...............

Please tell me what you think, Do I have celiacs or gluten intolerant?

what do I do next?

I would really like I diagnosis for my own piece of mind, what should I do now?

once you are gluten-free, if you aren't gluten sensitive/celiac, does your body kind of reject gluten if you eat it again?

once getting better, is it easier to tell what may have made you sick? how quick do you experience reaction?

how long does it last?

I would like info on the labs I have read about- what they can do, if Dr.'s accept results,anything else

who would be able to give me the most help-explain things (dr.'s, nutritionalists)???

What does the genetic thing tell you- do you have labs do it or dr.'s do it- what is it?

THANK YOU SO MUCH!

[ravenwoodglass]

Please tell me what you think, Do I have celiacs or gluten intolerant?

what do I do next?

You could try going with Enterolab for stool testing. They can tell you if your body is forming antibodies to gluten if you haven't been gluten-free for a long time.

I would really like I diagnosis for my own piece of mind, what should I do now?

once you are gluten-free, if you aren't gluten sensitive/celiac, does your body kind of reject gluten if you eat it again?

If you body is not sensitive to gluten you will not react when it is added back in. By eliminating gluten and then adding it back in you are doing a gluten challenge. If you are reacting it is a reliable part of the diagnostic process. Do be aware though that for some the reaction can be delayed by a couple of days.

once getting better, is it easier to tell what may have made you sick? how quick do you experience reaction?

Sometimes but not always. Some of us will show a reaction quickly and for others the reaction is delayed. A food and symptom journal can be helpful with pinpointing what is causing issues.

how long does it last?

This can vary from person to person. Some will get over a reaction after a day or two and others will have problems for a couple of weeks. In my case the D is over within a couple days but other problems continue for up to 3 weeks

I would like info on the labs I have read about- what they can do, if Dr.'s accept results,anything else

First make sure that the doctor did a complete celiac panel as well as checking your total IGA. Labs that do genetic testing can be useful but they cannot diagnose you because you can carry the genes but not develop the disease. Also some labs only check for 2 out of 9 celiac related genes. Some doctors accept stool antibody testing but some don't.

who would be able to give me the most help-explain things (dr.'s, nutritionalists)???

You could try and see if there is a celiac support group in your area that can guide you to a celiac savvy doctor or nutritionist. There is a great deal of variety in the amount of celiac knowledge that both groups have. You will also find a wealth of knowledge here. Ask any questions you need to.

What does the genetic thing tell you- do you have labs do it or dr.'s do it- what is it?

Genetic testing can tell you if you have the genes but is not diagnotic in itself as lots of people have the related genes but not all develop the disease. Enterolab can do the gene testing as well as the antibody testing and it can also be done through your doctor.

Also so very important you mention having a lot of med changes. You need to check to be certain any drug or supplement you are taking is gluten free. This can be done either through your pharmacist or contact the company yourself directly. If you are taking any generic drugs they need to be checked at each refill.

[bahrbdoll]

Thank you so much for all of the wonderful information! I was really hoping you'd responed, I have read many of your posts all of which are so helpful. When I read your information at the bottom of your thing (sorry I don't know what that's called) it's like you described me (for the most part). OK, so when I go to the gastro next what specifically do I ask him to do- could you please list by name all the blood tests and dna tests- I want the works! I have been gluten free for 2 1/2 months, but would do the gluten challenge if need be- I too like you had 8 million diagnosis and am taking a huge amount of meds for everything under the sun- I want the correct diagnosis and want to get off all these meds and be HEALTHY- Thank you again, I appreciate this so much

[ravenwoodglass]

Thank you so much for all of the wonderful information! I was really hoping you'd responed, I have read many of your posts all of which are so helpful. When I read your information at the bottom of your thing (sorry I don't know what that's called) it's like you described me (for the most part). OK, so when I go to the gastro next what specifically do I ask him to do- could you please list by name all the blood tests and dna tests- I want the works! I have been gluten free for 2 1/2 months, but would do the gluten challenge if need be- I too like you had 8 million diagnosis and am taking a huge amount of meds for everything under the sun- I want the correct diagnosis and want to get off all these meds and be HEALTHY- Thank you again, I appreciate this so much

It sounds like your doctor suggested you try the diet after blood tests and endo. He will have the results of your previous testing. Get copies of those tests and post them and we can let you know if they were a complete panel. Your doctor sounds like a good one and there are false negatives in both blood and biopsy which it appears he knows. What I am going to suggest is that you go to whole unprocessed foods for a while while you get the diet and lifestyle down. Stay away from restaurants for now. You should also eliminate dairy at least at first. Many are able to add it back in with no issues after they have healed.

I do not know what all meds you are on, I know I had a tackle box full before I was diagnosed LOL, but I am going to advise you strongly to contact your pharmacist and/or the maker of each drug and check it's gluten statis. If something you are taking is not safe the pharmacist will be able to contact your doctor to suggest an alternative. Your GI doctor ordered the diet so if you just tell them so they should check. Even the small amount of gluten in pills would be enough to keep you sick even if you were very stict with the diet.

You could also contact Enterolab, they have a web site. They can test you while you are gluten free and you wouldn't have to challenge the diet.

There are times when our bodies give us the answer when testing can not, that is the reason your doctor suggested you give it a good shot. But you have to be very strict for the antibody reaction to stop. It takes some time to heal but for most of us it took a long time to get as sick as we were before diagnosis.

I hope this is helpful and that you continue to improve. There is a lot of info on this site so read as much as you can and feel free to ask any questions you need to.