• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free For Two Months
0

7 posts in this topic

I have been on a gluten free diet for two months now and most of the pain in my neck and shoulder have gone. The swelling in my elbow and shoulder is no longer going on. I feel almost normal. There are still some remnants of the illness (the muscle is still smaller in my bicep), but overall I feel great. I no longer have gas. I am hungry for the first time in months. I am so hungry I can't seem to fill up, EVER. I eat plenty of vegetables and protein. I even started to take a multivitamin. I can run again and have even taken up rock climbing! Yay!

I have no diagnosis, but I cannot eat gluten for fear of returning to the ill health I had. Should I bother pursuing a diagnosis at this point? Will it hurt to just be gluten free? Is there any health concern that I should watch out for?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I know a lot of people here who simply go gluten free, just like you. I believe the philosophy is: why should I hurt myself just because we don't have the medical know-how to diagnose anything but celiac damage? Kind of like cutting ourselves for the doctor to prove to him that we bleed. As for any issue following the diet, no, it shouldn't hurt you to keep gluten from your diet, as long as you eat healthily.

The things to watch out for that I know of/have heard of...

1. Get tested for vitamin deficiencies now, if you can, and then again in about 6 months. Most adult diagnosed celiacs have some deficiencies. If you still have them later, then you may not be healing completely, might still be getting gluten in your diet, etc... You'll need to take supplements if that happens and perhaps cut even more gluten from the diet. Probably a good idea to get your thyroid tested, too.

2. Many celiacs take gluten-free supplements anyway, because most gluten-free products are not vitamin fortified like many wheat breads/products are. Vitamin D can be an issue for Celiacs, in that area, so getting some sun with your rock climbing should be great. ;)

3. watching your carbs can be an issue. I know some people go on low carb diets, but it's obviously up to you whether you want to go low carb, or just switch carbs. There's differing opinions about both. :-)

1

Share this post


Link to post
Share on other sites

I have been on a gluten free diet for two months now and most of the pain in my neck and shoulder have gone. The swelling in my elbow and shoulder is no longer going on. I feel almost normal. There are still some remnants of the illness (the muscle is still smaller in my bicep), but overall I feel great. I no longer have gas. I am hungry for the first time in months. I am so hungry I can't seem to fill up, EVER. I eat plenty of vegetables and protein. I even started to take a multivitamin. I can run again and have even taken up rock climbing! Yay!

I have no diagnosis, but I cannot eat gluten for fear of returning to the ill health I had. Should I bother pursuing a diagnosis at this point? Will it hurt to just be gluten free? Is there any health concern that I should watch out for?

If you're female and thinking of getting pregnant, make sure you've spoken with your OB beforehand about how much folate and how many prenatal vitamins to take. If you're deficient, you may need to take more supplements than you previously thought.

Double-check your vitamins and medications to make sure they don't contain any wheat products as filler.

I second the idea that you don't need any further diagnosis than having your symptoms improve so drastically after going gluten-free. Just notify future health care workers that you are gluten intolerant.

0

Share this post


Link to post
Share on other sites

Thanks for the info. I actually had some vitamin deficiency on my last round of tests before going gluten free.

I can't even get health insurance that I can afford right now because I had "idiopathic" neck and shoulder pain. Several companies turned me down. The high risk pool is too expensive. I was told by the rheumatologist I was possibly "gluten intolerant."

I basically lost my public school teaching job over this illness. The fact that I didn't look sick made it even worse because my boss was not understanding at all. I never realized that something like this could cause that kind of pain. I was going to give up playing the violin and teaching because the doctors kept telling me I just overdid it playing. (By the way, I'm back to practicing 2 hours a day and teaching or rehearsing for up to 6 hours a day.) I attribute all of the shoulder and neck pain to the gluten intolerance. I think I was just malnourished and had some auto-immune responses going on in the shoulder that caused my tendons to be weak.

I have been diligent about following the gluten free diet. I don't think many people could be better at it than I have been. I don't eat at restaurants. I am very good about screening labels and consuming low ingredient foods. I have discipline.

Everything I do was at stake because of this illness. I am very glad to follow a completely gluten free diet. I don't cheat myself by eating foods with gluten. My livelihood depends on it. I didn't think I needed to pursue a diagnosis, but I will be careful about the vitamin deficiency.

Thanks!

0

Share this post


Link to post
Share on other sites

Thanks for the info. I actually had some vitamin deficiency on my last round of tests before going gluten free.

I can't even get health insurance that I can afford right now because I had "idiopathic" neck and shoulder pain. Several companies turned me down. The high risk pool is too expensive. I was told by the rheumatologist I was possibly "gluten intolerant."

I basically lost my public school teaching job over this illness. The fact that I didn't look sick made it even worse because my boss was not understanding at all. I never realized that something like this could cause that kind of pain. I was going to give up playing the violin and teaching because the doctors kept telling me I just overdid it playing. (By the way, I'm back to practicing 2 hours a day and teaching or rehearsing for up to 6 hours a day.) I attribute all of the shoulder and neck pain to the gluten intolerance. I think I was just malnourished and had some auto-immune responses going on in the shoulder that caused my tendons to be weak.

I have been diligent about following the gluten free diet. I don't think many people could be better at it than I have been. I don't eat at restaurants. I am very good about screening labels and consuming low ingredient foods. I have discipline.

Everything I do was at stake because of this illness. I am very glad to follow a completely gluten free diet. I don't cheat myself by eating foods with gluten. My livelihood depends on it. I didn't think I needed to pursue a diagnosis, but I will be careful about the vitamin deficiency.

Thanks!

Have you explained the bit about your livelihood depending on it to your docs? Some will diagnose you (which means you're set) based on the response to the diet. It might make all the difference for everybody else.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Have you explained the bit about your livelihood depending on it to your docs? Some will diagnose you (which means you're set) based on the response to the diet. It might make all the difference for everybody else.

I don't think many doctors think professional violin playing is much of a livelihood. I had many tell me that I must have just overdone it playing the violin. It was a horrible kind of pain that couldn't have come from playing the violin. And it got better only when I gave up gluten. (Not when I gave up the violin.) I am convinced that the gluten free diet is the answer for me. I really can't gamble on going to a doctor at this point unless it's an emergency because my coverage from my old job ended and I was denied coverage at normal rates. I can't afford $500 a month for coverage. I'd rather go without. I hope I don't have any other health dilemmas for a while.

0

Share this post


Link to post
Share on other sites

I don't think many doctors think professional violin playing is much of a livelihood. I had many tell me that I must have just overdone it playing the violin. It was a horrible kind of pain that couldn't have come from playing the violin. And it got better only when I gave up gluten. (Not when I gave up the violin.) I am convinced that the gluten free diet is the answer for me. I really can't gamble on going to a doctor at this point unless it's an emergency because my coverage from my old job ended and I was denied coverage at normal rates. I can't afford $500 a month for coverage. I'd rather go without. I hope I don't have any other health dilemmas for a while.

It doesn't matter what they think is "much of a livelihood" - I don't think walking back and forth on Judge Judy and saying "The parties have been sworn in. You may be seated." is much of a job but I wouldn't deny that dude proper health care. Bah. They were stupid.

The next time you go in, see a different doc. Hopefully a non-idiot, non-jerk, competent physician. Just tell them that you are gluten-intolerant, diagnosed by trial diet. Don't elaborate. They'll put it in your chart and take your word for it from then on. Hopefully that'll be enough to make it "official" to the docs.

0

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
      106,784
    • Total Posts
      932,407
  • Member Statistics

    • Total Members
      64,262
    • Most Online
      3,093

    Newest Member
    plimpyanp
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello and welcome I'd just echo CyclingLady - do you need to put yourself through this? There are lots of good reasons for pursuing a diagnosis but amongst the strongest are helping you to 'keep honest' on the diet or ensuring that your not denying yourselves a lot of foods for good reason. Neither of these apply to you and so I'd have to ask what you have to gain by putting yourself through it?  Oh and: Me too, but every so often I fall of the wagon into a gluten free cheesecake or similar Best of luck!
    • My own bugbear is that in dismissing the fad diet journalists will typically reference Celiac but will often say that only Celiac patients should be following the gluten free diet. Whatever the consensus medical opinion of NCGS, it's a fact that there are many people who are not diagnosed Celiac but who have been advised by their doctors to follow a gluten free diet. That distinction is typically too subtle for such articles and they therefore help to support the idea amongst the wider populace that if you're not celiac you can eat gluten and if you're avoiding it your either deluded, a chronic attention seeker or jumping on a bandwagon. A reductive and potentially harmful generalisation. 
    • Hello,  Celiac Disease and alcohol consumption cause malabsorption that can lead to vitamin deficiencies. Nutrition has a part to play in connective tissue disorders like arthritis, Sjorgren's, Ehlers-Danlos, and polychondritis.  Here's an article about EDS and nutritional therapy. http://www.chronicpainpartners.com/nutritional-therapeutic-strategy-for-ehlers-danlos-syndrome/  Vitamin D is really important in controlling inflammation.   https://www.ncbi.nlm.nih.gov/pubmed/23830380 You might consider checking for vitamin deficiencies at your next doctor's appointment.   You might want to look into a low histamine diet and mast cell activation syndrome.  I found going on the Autoimmune Immune Paleo diet, a low histamine diet, and a low sulfite diet simultaneously helpful.   The low histamine diet doesn't allow anything fermented. If your reaction to the fermented cabbage is "ugh," it's your body telling you not to eat it.   Cabbage, fish oil, and wine are high in Sulfites.  Metformin is a sulfa drug.  Your body might be inflamed because of a Sulfites hypersensitivity that may occur with Celiac Disease.   These are things I found helpful.  It took several months to figure out what works for me.  I'm doing much better now.  Like CyclingLady, I "eat to my meter" and don't take medication.  I hope this helps us on our journey to wellness.
    • Well first things first, I always read your posts with interest, you have gone the extra mile for answers, put the intellectual work in and crucially kept a rational and grounded perspective throughout and if anyone deserves them you do.  Sadly of course I don't have any,  so I'll simply send my sincere best wishes across the Atlantic.  I really do hope you find your answer.  On this: I tested negative for celiac and my endoscopy didn't show villi blunting. I do however definitely react to gluten in all sorts of ways. So I'm in the nebulous NCGS group, a condition that most of the world seems uncertain even exists or if so questions its relation to gluten.  I wanted certainty and answers and I never really got them. I've come to accept that it's an imperfect world and this is still in medical terms an imperfectly understood area. I've had to park the question of whether I had celiac but it wasn't picked up (there were some flaws in the diagnostic process) or early onset celiac or NCGS or its really fodmaps and I'm working on a false correlation or it's NCIS, no, CSI New York, etc etc. In the end I was exhausted, sick of feeling ill and had proved to my own satisfaction that gluten was a problem and I decided to leave it at that. It's not ideal by any means, but, hey, whaddya gonna do?  There are things I know about my own condition that I can't necessarily demonstrate or have validated by a test. It is, by definition, anecdotal at best, but I'll offer it in any case. One of them would be the recovery on the gluten free diet. This was very much a matter of time. I did have some very quick responses, within a few days for instance for an improvement in brain fog, anxiety etc. Some of the weirder neuro symptoms seemed to take much longer and although the endoscopy was negative for villi damage I can't help thinking that malabsorbtion may be an explanation for the time some of these longer term issues took to resolve.  Weirdly some of those neuro symptoms, say the muscle twinges, that took a long time to resolve now seem to trigger occasionally I think in response to minute cross contamination issues. I have no idea what this means, maybe they require the least amount of gluten present to present so they were amongst the last to stop? I know just a few days ago I was noticing an errant muscle repeatedly twitching and I started thinking about the bbq I'd just risked using... None of which of course proves anything or gets you further down the road. I do think however that this: is a good idea and I'd encourage you to push that limit back from the end of summer to a date at least 6 months and perhaps longer away (I'm thinking 12). The gluten free diet is a pain in the arse but it's healthy (or it is if you make it so) and aside from a slight increase in expense it's increasingly straightforward to follow. Go gluten free, apply just the same rigour in pursuing the diet that you have in looking for answers. Do the food journal. Do the whole foods for 3 months, cross contamination procedure with pans, check toothpaste etc.  In short, proceed as if you'd had a positive celiac diagnosis and try to eliminate all doubts. For X many months, live as if gluten free isn't a choice, but a necessity.  It makes it easier believe it or not. Give the diet sufficient time and you will be running perhaps your last test by yourself, for me that was the most significant test of all.  Oh and on this: I learnt, at great personal cost in terms of the sheer misery I went through that my view of health professionals was juvenile and unhelpful. The unquestioning belief that as children we invest in doctors, nurses etc can translate into an over investment of trust to a level which would not be the case in any other comparable scenario. You go to them at your weakest moments, in search of validation, comfort, solutions etc. and if you have a bad experience the first impulse is to blame yourself or question your own experience. Well I'm way past that now. Just like any other walk of life there are good, bad and lot's of indifferent people working within. I've had some great experiences but I've also had some awful ones and indeed just a few days ago I had one so bad that for the first time in my life, I lodged a complaint. Please understand as a British person this is very unusual indeed  It was a horrendous meeting and I was treated in such an appalling way that if I related it here you may not believe me. A couple of years ago it would've destroyed me. Now I just shrugged it off, then realised that if I allowed that behaviour to pass unquestioned I'd be doing a disservice to the next person who had to suffer that kind of treatment. You've shown on here your an intelligent person with a fully justified and admirable engagement in looking for answers. If your doctors aren't picking up on that the fault lies with them. tldr **** them. Best wishes from the sunny UK  Matt  
    • I think the gripe with this sort of article is that it's not telling the right story. When you write anything, you have a choice about whose story you tell and the consequences of it.  While such articles are factual in the sense that objectively, a GFD is worse than a similar regular one, the focus of these articles undermines the struggles of those who must be gluten-free while also not really giving any information that is likely to result in changed behaviour. All this sort of article does is justify the anti-gluten-free circlejerk. I think many of the journalists here think they're on the side of people with celiac disease because they're underlining that the fad diet is dumb/pointless/harmful/whatever. While this may be true, the message the reader remembers is this: the GFD is frivolous. It doesn't matter if there's a line in the article that says something about how the GFD is a medical necessity for those with celiac disease. People don't remember the asterisk in the article. All they remember is that the GFD is for idiots.  What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.
  • Upcoming Events