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A Question About Malabsorption:
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Im newly (self) diagnosed, via elimination diet. I've been gluten free for about 1.5 months, aside from one accidental exposure, and again to see if I had another reaction . Both times the reaction was severe. Anyhow, now that I know that the gluten has been the culprit, I can look backI on the past 3+ years of my life (Im only 21...) and so many symptoms can be accounted for: severe depression, joint pain, mouth ulcers, fat in my stool, diarrhea, premature labor, headaches, severe bloating, difficulty losing weight, etc. Some of these symptoms indicate a nutrition deficiency, or malabsorption. I know that is one of the major problems created by celiac. I know I ought to get vitamin levels checked ASAP; Which ones would be recommended? Also, in time, does the body heal and start absorbing nutrients again? Should I start taking enzymes? Please, share your experience with me. Have a blessed evening.

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I would suggest a doctor's appt. this is a serious disease with serious side effects from not getting proper nutrition after the diet. There is a real risk and many people know so little about it. Just because there is no medicine to cure it doesnt mean it is safe people to walk around self disgnosing without having a doctor look into the possiblity of there being something else wrong - either from lack of celiac disease or as a result of celiac disease. It is often misdiagnosed or ignored as a possibility.

While i am sure most appreciate you asking for their opinion on this matter, we are not doctors. Don't trust us with your life -no matter how "experienced" we may be with it.

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I have a doctors appointment for tomorrow actually. I've asked to be checked for any nutrition deficiencies. Ir got various other symptoms going in, that I'm seeing a specialist for. However, the area I live in doesnt offer any physicians who are in the know about celiac or gluten intolerance. My family doctor actually told me not to come in if I already knew I had an aversion to gluten. I say self diagnose because I experimented with the diet, and when I' try to eat gluten now, I get very I'll. I'm nursing right now and mentally can not handle to go back on gluten for one month+ just to get a positive test result. I'm trying my best to get referred for a biopsy, but the area I live in makes this hard. So, right now all I can do is eat a gluten free diet ad try to make sure Im absorbing the nutrient I need to be healthy. financially, getting this all sorted out seems nearly impossible.

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I would suggest a doctor's appt. this is a serious disease with serious side effects from not getting proper nutrition after the diet. There is a real risk and many people know so little about it. Just because there is no medicine to cure it doesnt mean it is safe people to walk around self disgnosing without having a doctor look into the possiblity of there being something else wrong - either from lack of celiac disease or as a result of celiac disease. It is often misdiagnosed or ignored as a possibility.

While i am sure most appreciate you asking for their opinion on this matter, we are not doctors. Don't trust us with your life -no matter how "experienced" we may be with it.

I agree, but try to find a doctor who understands nutrition and supplements (with blood tests to back it up for good measure). Most doctors have a rudimentary working knowledge but some really have dived into studying it. My doc tests for LOTS of different things, the usual stuff, too, and as much as I hated getting blood draws, I'm really glad he does. I've been trying to be gluten free for about 4 years. Didn't take it really seriously at first. Thought I could cheat. Thought it was a question of "a little gluten vs a lot." Well I finally got the message. My doc has now come to the conclusion that some celiacs can't handle corn gluten either, so I'm doing NO grains for a month to see if my arthritis symptoms get better. We'll see, I'm on week 3.

This disease is really like the "Magical Mystery Tour!" You just never know what to expect, and it changes daily I think!

Luddie

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Specifically ask to be tested for iron (including ferritin level), folic acid, B12, magnesium, and Vitamin D to start with. These are nutrients that celiacs tend to have trouble absorbing. Probiotics and digestive enzymes may help you to start absorbing nutrients better, and many people have been helped with L-Glutamine.

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Just a thought, why don't you have a doctor simply do the Celiac Panel on you or the gene test (if your insurance will cover it)? It is a simple blood test...if your doctor knows you are pretty sure you are Celiac, he/she would probably gladly run the blood work. Even if the results are negative, you know that eating g.free is helping you. But, if the results are positive, you may want to find a good g.i. doctor to "monitor" you...even if you only go to that doctor if you have issues. Because Celiac Disease itself is hereditary, it would be good to know for sure so that if you ever have children you can keep an eye on them & get them tested.

Now, with that said, I completely understand not wanting to dive into a bunch of dr apts. But, Celiac is a serious disease. I personally was diagnosed a year ago after being really sick...in the hospital, lost 22 lbs in a few weeks, etc. Anyways, I have been thankful for my G.I. doctor that specializes in Celiac because he understands what is going on in my body. We also have 4 children, so we immediately did the gene test on them & the Celiac Panel. 2 of our kids do not even carry the gene for Celiac, so we don't have to worry about monitoring them. 2 of our kids have the DQ2 gene & tested positive on the panel...we are looking at doing the biopsy for confirmation & I have been dragging my feet on getting that done because they are children, yet we want a definate answer.

I know how frustrating & overwhelming figuring all of this out can be. Again, this is all just my opinion...

Good Luck on this journey...keep us posted on how it is going...

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OP- Since you are already gluten free and are not in a position to do a challenge for celiac testing do follow Rose's advice on the testing you should get done.

Mommyof4- Please do not assume that your two children that tested negative for DQ2 are never going to develop celiac. There are diagnosed celiacs without the most common of the celiac associated genes. My DD had her biopsy and blood positive diagnosis 'taken away' by a different doctor because she doesn't have the genes that are the most common. Time will tell what the repercussions of that are going to be as she then went back to a gluten diet. If you children develop symptoms retest them and then try them on the diet no matter what the results.

Since the OP has already been gluten-free for over a month and has seen good results on the diet and a reoccurance of symptoms when glutened she may not be able to handle a challenge. This is especially the case since she has a young baby she is nursing. While it is ideal for us to get tested before starting the diet some of us will show false negatives even on gluten (I am one and you can see by my sig what the doctors trusting those false negatives did to me) and some of us just can't physically handle the challenge needed to do the blood work after we have been gluten free.

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I highly suggest seeing a holistic nutritionist or naturopathic doctor for more help on what you need and what to eat. If you don't know any in your area, this woman does long-distance consultations (and is expensive, but the information is worth it!) http://chriskresser....ew-patient-info

I also found my fantastic chiropractor on this website, and he helped with my nutrition immensely (I know it says it's about thyroids... but really these practitioners specialize in auto-immune disorders.):

http://www.thyroidconnections.com/

The body does eventually heal in most people. You're young, so you will probably heal wonderfully.

In my experience eating foods that are really nutrient-dense is so essential. Supplements are sub-par and too often totally ineffective. Bone broth, cod liver oil (traditionally fermented), organ meats, nettle infusion... all great things to add to your diet that cover many common nutrient deficiencies.

Best of luck to you!!

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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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