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Looking For Advice

JessicaHall

By JessicaHall
in Coping with Celiac Disease

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JessicaHall Rookie
JessicaHall
Posted

Hey All,

I need Help!!! I feel like I haven't found a doctor that has really cared about helping me or finding out what is wrong. When I was about 15 I was diagnosed with IBS. I knew there was more to it then that. I've had diarrhea or very loose stool as long as I could remember. One Doctor told me "maybe loose stool and diarrhea is just NORMAL for you" ... Are you kidding me .. Could you even believe a doctor could say that ... I know I couldn't! Now at 24, Had a colonscopy done, had two polyps removed. (Both non-cancerous) no sign of colitis, or diverticulitis. My husband was the one who researched Celiac Disease and explained to the doctor that maybe it was a good idea to check and see if this is something I had. All the symptoms lined up so I was sure we finally got down to the bottom of it. I've been on the gluten free diet for about 3 weeks now and I had a biopsy done of my stomach and beginning of my large intestine. All came back negative for a gluten sensitivity. My stomach pain isn't as bad as it was however I'm still having very loose stool if not diarrhea.

NOW, I'm just so confused, upset, and discouraged. I don't know what is wrong and I'm not sure if I should stick to the diet because the test came back negative. Is there a possibility that I still could have Celiac?? Could it be something else? I haven't the slightest idea where to start. My husband and I would like to start a family soon however we both agree that I need to be healthy enough to carry our baby. All I want is to get down to the bottom of this! I need help or any kind of suggestions or advise. Thank you so much!

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ravenwoodglass Mentor
ravenwoodglass
Posted

False negatives are not uncommon. In addition it can be hard at first to do all we need to do to be gluten free. If you have gotten some relief from the diet keep it up. You won't heal overnight, it takes a while. It is best to start with whole unprocessed foods and also to drop dairy from your diet until you have healed well. Also make sure you have checked all supplements and all scripts, generics need to be checked at each refill. You also need an area of the house that is free of gluten for food prep if others are still consuming it in the home. If your husband is still eating gluten you also need to make sure he brushes his teeth after eating gluten foods or drinking gluten containing beverages like beer. Really just the little bit of residue in his mouth can make you sick with a kiss. Celiac is an antibody reaction and even a tiny bit can set the antibodies in motion. Don't share a toaster or condiments, pnut butter or anything that has had a gluteny knife dipped in. Give it a bit of time and ask any questions you need to. I hope your feeling better soon.

mamaw Community Regular
mamaw
Posted

Hello

You stated you had an endo done but if that was done after you were gluten-free for a few weeks then the test would not be a true test. You must be comsuming gluten for several weeks or longer to get an accurate result. Also it can take years for some to totally heal the years of abuse put on their intestinal tract, some get relief sooner than others. Plus celiac ( intestinal damage) or gluten intolerant or sensitive it really doesn't matter in the end because the only help is the gluten-free diet......you may need to give the gluten-free lifestyle 6 months with no cheating & see how you feel at that point. No one ever died from not eating wheat so in the end it will not hurt you to try gluten-free...if you feel better then stay on the diet.

There are several other illness' that mimic celiac as well........

Doctors don't listen very often to their patients! Sometimes we must take our own health into our own hands.....

blessings

mamaw

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Welcome to the Wonderful World of gluten free living. It is so nice to hear that your dh is wanting you to be healthy. I'm sure he would not mind if you make your household gluten free. It may help.

As the others said you may need to cut out the dairy until your intestines heal. I cut out gluten, dairy and soy for the first 6 months. Then I started adding dairy and soy back to my diet. I have no problems with dairy or soy now.

Going totally gluten free will make a world of difference in your life, your moods, your mind and your health. Start by checking everything that goes into your mouth to be sure it's gluten free: medications, vitamins, drinks, toothpaste, lipstick, food, candy, dh tongue, breath mints, soy sauce. You will be surprised where gluten is hiding. Also coated pots and pans, toasters, bread boards, wooden items and plastic items can hold gluten and you can get sick from them. Eating out and at someone's house can make you sick. Some people do not realise just one tiny bread crumb can cause you great pain and stress.

Do not panic. Just start checking and replacing items as you find them. You can do this. You will not believe how well you will feel once the gluten is removed from your life.

I have always had problems my whole life. I did not find a doctor until I was in my 50s that said I should be gluten free. You are lucky to start this at your young age.

My dh just went gluten free about 2 months ago. He now will not put gluten in his mouth. It only took me 8 years to convince him to do this. He can not believe the difference.

Keeping a food journal may help pin point other intolerances you may have but are not aware of at this time.

I do believe it is the small intestines that need to be biopsied for celiac disease. All tests can be negative and you can still have celiac disease. This is why it is so hard for doctors. They seem to need a positive lab test.

I say the best test is a gluten free diet. Since you are still new to a gluten free diet you are probably eating something with gluten. Also some probiotics might help to firm up the stools.

For finding a good doctor, try posting under the Doctors forum. Post your city and state in the Topic Title. That way someone in your area may see it and give you a referral.

one more mile Contributor
one more mile
Posted

Gluten free for a year and a half. Went from being bed ridden to now living a normal life. My doctor tested me and said i was negitive for celiac but who cares. My whole family, friends and child see how different and healthier I am now. I know what happens when I eat gluten and I know what happens to my body when I do not eat it. As nice as it would be to have a name for what is going on, at least today I have a solution!!!!

JessicaHall Rookie
JessicaHall
Posted
  • Author

Thank you all for all your replies.

This truly helps me I'm going to try and stay positive...

mysecretcurse Contributor
mysecretcurse
Posted

Trust me when I say that most of us, for whatever reason, seem to know more than 90% of these doctors out there. My experience with doctors is that they are completely clueless which is why I haven't been to a doctor in years now. Id rather just take my money and give it to a homeless person or something, it would do more good! Every time I went to a doctor I left feeling more angry and confused about my condition than ever before. They never once suggested I had celiac disease, I found that out on my own, and no I never had any of these stupid tests because I see so many people test negative when they ARE sensitive that it just feels pointless to me. The tests might catch something sometimes but they arent very accurate at all. SO many people have tested negative and still react violently to gluten.

I used to be covered in head to toe psoriasis as well has having severe cystic acne which I believe now to be DH, as it never "behaved" like normal acne. Dermatologists were clueless. Just threw expensive creams at me which did nothing but make it worse (because its NOT acne!). A dermatologist straight up looked me in the eye and told me "There is no connection between food and skin problems. Eat your ice cream all you like."

SIGH.

Good thing I didnt listen huh? Two years gluten free and avoiding other foods that bother me and psoriasis is completely GONE and the only time I get the cystic acne/Dh or whatever is WHEN I ACCIDENTALLY consume these bothersome foods! So hmm.. no connection? Makes me wonder what 8+ years of schooling is for when I can figure out how to heal myself on my own.

Trust your "gut". Literally, lol. If gluten doesnt feel right for you, DONT EAT IT. I would recommend anyone with any sorts of gut or skin problems to go off gluten. It has no nutritional value of any importance anyway and its just hard to digest. There's no point. If I had listened to doctors, Id likely be dead now.

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misslexi Apprentice
misslexi
Posted

Everyone but my doctors/GI specialist asked if I had celiac disease. okay, one doctor gets a gold star. my rheumatologist asked my mom if I had been tested for celiac disease. I can't even remember how many tests I had done, and how many of them were half assed. labs screwing up, doctors screwing up, doctors neglecting things, specialists outright lying on the papers saying I refused tests I didn't even know existed. I think i left 90% of appointments crying because of how the doctors treated me. my GP yelled at me for refusing a additional part of an ultrasound. i had no idea it was ordered, I was never asked (i wouldn't have said no, i didnt care what they did as long as i got better) anything like that. so yeah...just because a doctor tells you the sky is green and the grass is blue doesn't mean its true.

i still have the same issue as you, almost 2 months in to my gluten free diet. my stomach pain is barely noticeable, but I still have both of your other problems at times. I think it might be because I'm not getting something or other that my body needs. all my other vitamins and minerals are messed up, so why not? i think you should stick with it if you are feeling better, and just wait and see. maybe it will just take (both of us) some time to heal and for those things to go away.

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