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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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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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