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A Question About Malabsorption:


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7 replies to this topic

#1 tylerevelyn

 
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Posted 22 October 2012 - 03:43 PM

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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#2 Skysmom03

 
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Posted 22 October 2012 - 06:01 PM

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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#3 tylerevelyn

 
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Posted 22 October 2012 - 07:21 PM

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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#4 Luddie

 
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Posted 22 October 2012 - 07:21 PM

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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#5 rosetapper23

 
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Posted 22 October 2012 - 07:47 PM

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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#6 mommyof4

 
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Posted 27 October 2012 - 06:04 AM

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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#7 ravenwoodglass

 
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Posted 27 October 2012 - 09:19 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 dreacakes

 
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Posted 02 November 2012 - 01:00 AM

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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Debilitating tendonitis in both arms in 2003, at age 23, declared "permanent and stationary" by workman's comp doctors.
Fibromyalgia diagnosis in 2010.
Mild hyperthyroidism diagnosis 2011.
Disc Degeneration diagnosis 2012.
Life long battle with hypoglycemia.
Gluten Free since 2010. On Paleo-type diet since May 2011.
Suffered years of brain fog, back spasms, nausea, and recurring connective tissue pain and injuries. After years of misdiagnosis, I did my own elimination diet and discovered a severe reaction to wheat gluten and casein. After going on a grain free, nightshade free, Paleo-ish diet, my symptoms are nearly gone, and I FINALLY KICKED THE BRAIN FOG!
Cheers to health! <3




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