Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

A Question About Malabsorption:
0

8 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites




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...

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!!

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,655
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined