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Hmm...not sure where to start.... I guess I will start with my son. About 5 years ago I started researching answers for my son's behavior problems. He was found to have ADHD, gluten and casein intolerances as well as allergies to other foods. He has been on a gluten free casein free diet for about 5 years, and we are still learning.

I have basically been on his diet in order to keep him on it, but I do cheat much more often than he does. I did notice some improvement in my sinus problems and some bowel changes when I started eating the Gluten-free Casein-free diet. I also noticed that I seem to have problems with certain foods such as severe stomach pains with eggs and broccoli and oatmeal constipates me. Since Christmas I have eaten more things more frequently that are not Gluten-free Casein-free. I have become increasingly tired. I ache all the time especially in the mornings. My back muscles stay extremely tight to spite buying a new mattress. I have a rash on the back of my neck that won't go away and have been getting sores in my mouth. My mouth got real bad last week, my tongue felt 3 times its normal size making it difficult to pronouce words. My GI track was a mess from my mouth on down. I can't say I really have diarrhea but mostly constipation with occassional loose stools. Anyway I finally went to the doctor about my mouth which was almost healed by the time I got the appointment. He did a CBC which was off. He said I may be deficient in folic acid and vitamin B12 and said to take vitamins and come back to have the blood tests again in 3 months. Since my appointment I have noticed tiny blister like bumps on my knees (only a few) that itch. (I can't see the rash on my neck so not sure what it looks like.) Also, over the past who knows how long, I can't seem to think straight, my brain seems to be in a fog all the time, and for a long time I have been fighting depression.

Ok, for the questions. I am wondering that with my son's problems might I have had undiagnosed celiac disease? If I take vitamins for 3 months, whether or not I keep eating gluten, will that mask any deficiencies that are there due to malabsorption? I feel that from what I eat, I should not be deficient in either B12 or folic acid. Should I take the vitamins, wait three months and see what happens or ask the doctor to do the blood tests for celiac disease or refer me to a gastroenterologist?

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Talk to your doctor about the changes the diet has made for you. It sounds like you went gluten-free, then started eating some again, and your body is now throwing a fit at you because it doesn't like gluten! Since your son is gluten-intolerant, he most likely inherited it from someone: you! Taking vitamins will not mask the symptoms of celiac. Being gluten-free will make the tests come back a false negative, unless you do the Enterolab tests. I wouldn't wait three months. Three months is a long time to not feel well.

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HI feedjake92,

I would make an apt to see either your Gastro or Family doc as soon as possible and talk to them about the symptoms you are experiencing. I sugget making a list of your symptom, making notes of when they started and how long they last. Also keep a food diary or everything you eat, that way it will give your doctor a much broader view of your health problems.

Good luck to you and God Bless

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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