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Waiting For Test Results

marpemb

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marpemb Newbie
marpemb
Posted

Hello, i am new to this forum (actually i've never posted on a forum before....lol) and i'm currently waiting for test results to see if i truly have celiac or just some weird food allergies. I have fought chronic fatigue, debilitating migraines and dealing with what was diagnosed as IBS and reflux.....all of which have gotten worse over the years, especially the GI problems. I saw a neurologist several years ago for the migraines because they had gotten worse and was told that it was because i was over 40. So after i moved to another state a couple of years ago i sought out a new neurologist as the migraines started getting way out of hand (couldn't tolerate Topomax, propranolol, Lamictal, etc) and not able to control them with triptans as well as before and i then developed vertigo and balance problems and the fatigue was worsening. He immediately noticed my reflexes were not right and decided to do an EMG/nerve conduction study which showed peripheral neuropathy. MRIs of the brain and neck were ok (thank goodness).....he was thinking MS. I am not diabetic and did not have any medical conditions that would cause peripheral neuropathy so he ordered numerous blood tests. I was magnesium and B-12 deficient so i started on B-12 injections and am currently on them weekly (yep, that's a lot) and 800mgs of magnesium a day which has actually helped with the migraines. All the while i'm still struggling with the abdominal bloating, distension, cramping and pain. I tried to change my diet and started eating high protein cereal bars, more whole grains and fiber and OMG i thought i was going to die!! Everything got worse!! So then i start thinking......hmmm, i'm almost 45, maybe this is early menopause. I was so desperate to find what the problem was. So i saw my GYN who ordered hormone tests along with the normal bloodwork that you have yearly and my vitamin D levels were low (not menopausal yet!). So then i had to start on 10,000 units of vitamin D3 five days a week for 8 weeks and recheck it. In my desperation i started googling all this stuff and kept coming up with celiac. I never dreamed there could be so many signs and symptoms including vitamin deficiencies, fatigue and everything else that was going on with me. I immediately scheduled an appointment with my family doctor so i could throw all of this into one bag, so to speak and the first thing he was very concerned about was celiac (he actually was diagnosed with celiac several years ago) or at the very least wheat allergies. So they drew what seemed like 50 vials of blood (lol) and i arrived home from work yesterday to a message from my doctor that i needed to call him Monday and "talk about these tests". I was surprised since he usually has his nurse call or they send a note in the mail. I actually have laid off the bread, cereal bars, pasta, etc since my appointment last Tuesday and have already noticed a difference in the GI problems which would be enough to keep me away from those things even if my tests were negative. Anyway, just wanted to vent some......i'm really anxious right now just wanting to know and wanting a solution. My poor husband is probably tired of hearing me complain about my stomach aches, tiredness, etc. and I'm just so tired of all this myself. I just want to feel good again :(

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

Welcome to the world of gluten free living. You will enjoy feeling better, it will exercise your mind as you find out what foods do not contain gluten and you can vent here any time. Let us know the test results. Sounds like you lucked out with finding a doctor who has/knows about celiac disease.

You'll get more info here than any where else. No two people are the same so you will get many suggestions. You will be able to try out different ideas and find what works best for you.

My suggestion is to go totally gluten free immediately. I went gluten free with occasional intentional gluten a few times a year for several years. A little over two years ago I went totally gluten-free. I can't believe the difference it made. Well worth the time and trouble.

Keep us updated on how you do.

marpemb Newbie
marpemb
Posted
  • Author

Thank you so much! I do have a question. Do they routinely test for celiac during a colonoscopy? I know they take specimens to biopsy for cancer, etc but i just wondered about it.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you so much! I do have a question. Do they routinely test for celiac during a colonoscopy? I know they take specimens to biopsy for cancer, etc but i just wondered about it.

Welcome to the boards. You do sound like you very well could be one of us.

They do not check for celiac in a colonoscopy as the small intestine is the one affected and the colonoscopy only checks the large. The test done for celiac is the endoscopy. If you think you may want to get an endo done for confirmation do NOT go gluten free yet. There is the risk of a false negative with an endo so if you are having one done you should go gluten free as soon as the test is done. You don't need to wait for the test results. Not all doctors will insist an endo is needed. It sounds like your doctor is Celiac savvy and it is possible that with your history and blood tests results he will consider you diagnosed. Even if those blood tests were negative do give the diet a good strict try as soon as all the testing you want to have done is done.

Let us know how the appointment goes.

marpemb Newbie
marpemb
Posted
  • Author

My antibody tests came back negative. I can hardly believe it. They said it showed a low grade allergy to cow's milk. Funny that dairy products don't really bother me but gluten containing foods do. I haven't really gone gluten free. I tried for about a week watching my diet and noticed a big difference (this was only after the blood was drawn) then i went back to eating normally and have been miserable since. I'm actually sitting here crying like a baby b/c i feel so bad. I just don't know where to go from here. I can't handle the fatigue, weakness and stomachaches anymore. It's not that i want to have something like this. I just need answers and relief and everything points to celiac disease. But i guess the blood tests tell all.

homemaker Enthusiast
homemaker
Posted
My antibody tests came back negative. I can hardly believe it. They said it showed a low grade allergy to cow's milk. Funny that dairy products don't really bother me but gluten containing foods do. I haven't really gone gluten free. I tried for about a week watching my diet and noticed a big difference (this was only after the blood was drawn) then i went back to eating normally and have been miserable since. I'm actually sitting here crying like a baby b/c i feel so bad. I just don't know where to go from here. I can't handle the fatigue, weakness and stomachaches anymore. It's not that i want to have something like this. I just need answers and relief and everything points to celiac disease. But i guess the blood tests tell all.

(((Hugs))) I am waiting on my blood work too! I have already decided to go gluten free if my blood work comes back negative...I think there is alot they don't know in regard to gluten intolerance or gluten sensitivity...You can not have Celiac and still get tummy troubles from Gluten...So I am going Gluten Free if my work is negative...

nasalady Contributor
nasalady
Posted
My antibody tests came back negative. I can hardly believe it. They said it showed a low grade allergy to cow's milk. Funny that dairy products don't really bother me but gluten containing foods do. I haven't really gone gluten free. I tried for about a week watching my diet and noticed a big difference (this was only after the blood was drawn) then i went back to eating normally and have been miserable since. I'm actually sitting here crying like a baby b/c i feel so bad. I just don't know where to go from here. I can't handle the fatigue, weakness and stomachaches anymore. It's not that i want to have something like this. I just need answers and relief and everything points to celiac disease. But i guess the blood tests tell all.

Marlie, there are lots of false negatives with the bloodwork! No, blood tests do not tell all!

Yes, it's good to try to get a firm diagnosis, but if the tests are negative, and you have a positive response to the gluten free diet and you feel TERRIBLE on gluten, then please listen to your body! It's trying to tell you NOT to eat gluten!

The only reason you should stay on gluten now is if you are waiting for an intestinal biopsy. Otherwise, jump right into the gluten free diet and feel better!

((hugs))

JoAnn

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marpemb Newbie
marpemb
Posted
  • Author
Marlie, there are lots of false negatives with the bloodwork! No, blood tests do not tell all!

Yes, it's good to try to get a firm diagnosis, but if the tests are negative, and you have a positive response to the gluten free diet and you feel TERRIBLE on gluten, then please listen to your body! It's trying to tell you NOT to eat gluten!

The only reason you should stay on gluten now is if you are waiting for an intestinal biopsy. Otherwise, jump right into the gluten free diet and feel better!

((hugs))

JoAnn

Thanks JoAnn, i think you're exactly right and going gluten free just makes sense. I have read about several instances where people have false negatives.......why wait when you noticeably feel better without gluten???? And i worry about my 24 year old son possibly having it. Several times we've thought he was allergic to seafood, then we were thinking peanut oil or something they were preparing the seafood in then when all this came up it dawned on me that when he is eating the seafood he usually has quite a large helping of pasta along with it. Three times he will sit down to eat and several minutes after he begins he gets tingly around his mouth, his face turns blood red and he vomits several times. We're getting him in with an allergist but i wonder if it could be more celiac related. He has tried shrimp several times since (of course i was hysterical and ready to call 911) and nothing happened. But it was shrimp alone. Something else he's consuming is causing the problems and i truly wonder if it's gluten!!!

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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