• 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.

Do Intolerances Level Off?
0

10 posts in this topic

Okay, I've been gluten free since the beginning of November and casein free since the middle of December...I'm still having some issues with D, which could be from a lot of things, including what my doctor thinks may be C. Diff or colitis from antibiotic use (she found blood in my stool). I'm also thinking something I'm eating may be adding to the problem and am trying to weed out any other food intolerances.

I understand that it may take a while for my gut to heal...I'm okay with that. I understand we may get or find many other food intolerances...I'm okay with that too, lol. My question to the long time gluten-free folks is, at some point do the new intolerances level off...have you found that it took a while perhaps but now you're now not finding new intolerances?

0

Share this post


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


Yes, eventually intollerances do level off, but it does take a long time. To start with I think your body is so used to reacting against every food (because almost all our food had gluten) it just automatically reacts to anything remotely similiar that you put in your mouth. I found that acupunture treatments helped a lot. I'm not sure if it just served to relax all the digestive parts or what .. but it did help.

Also ... I find that especially in the early years, I would worry about going out anywhere because of bathroom problems. It wasn't intollerances that was causing the extra D ... but it was the "worry" that tightened all the stomach muscles and therefore complicated the problem.

In other words .. the stress related to this disease can cause D even without gluten. Relaxing techneques help, as does getting interested in something, whether it be a hobby, volunteer work, or working with your dog. Just do something that doesn't give you time to worry about what your stomach is doing!!!

It's pretty hard at first ... but hang in there .. it does get better! :D

0

Share this post


Link to post
Share on other sites

Thank you Shirley, that helped a lot! Stress makes sense I guess...I try not to stress about anything, but I know that it's there just the same and it doesn't help with things happen like today. My doctor's office called today (Saturday, :huh: , lol) and wanted to talk to me (unfortunately I wasn't home and by the time I called them back they were gone)...she said it was nothing urgent, so I'm trying not to worry...I had a whole bunch of tests run so I'm thinking she was calling about the results of the C. Diff test, but I'm also thinking it if was all negative they would have sent a written report like they did with the blood work, lol. :unsure:

You are the second person to mention accupuncture, and I actually have the name of some one who is supposed to be very good, maybe I'll give that a try too.

0

Share this post


Link to post
Share on other sites

Were you taking antibiotics before you got sick? Thats what causes C-Diff infection. I have C-Diff but for some reason I dont have the hallmark "D" that goes with it. Last night I had a major attack though. I just finished antibiotic treatment for the c-diff Thursday and then last night I tried to eat some rice...took a nap...and got woken up with the worst cramps imaginable. I stayed in the bathroom awhile with "D" and cramps so bad I was dizzy and crying. Its rare that I get those bathroom "episodes" that I hear about so often on this board. After last night I'm really glad its not something I deal with on a daily basis. I thought I was gonna die. :(

0

Share this post


Link to post
Share on other sites
Were you taking antibiotics before you got sick? Thats what causes C-Diff infection. I have C-Diff but for some reason I dont have the hallmark "D" that goes with it. Last night I had a major attack though. I just finished antibiotic treatment for the c-diff Thursday and then last night I tried to eat some rice...took a nap...and got woken up with the worst cramps imaginable. I stayed in the bathroom awhile with "D" and cramps so bad I was dizzy and crying. Its rare that I get those bathroom "episodes" that I hear about so often on this board. After last night I'm really glad its not something I deal with on a daily basis. I thought I was gonna die. :(

Same thing used to happen to me sporadically....thank goodness it wasn't daily! And often the attacks would strike in the middle of the night, too! I'd have D but also be feeling like I was going to throw up, so I'd be sitting there with a garbage can nearby cuz I sure couldn't get up from where I was sitting! What I can't believe now that I look back on these things, is why on earth I wasn't more suspicious about gluten. I knew dairy affected me, but I think the reality is that I usually ate gluten and some form of dairy daily, so the combination of the two was really doing me in. But I kept thinking it was dairy, and then so many other foods affected me and I'd go thru periods of time where I felt there wasn't a single food on the planet I could eat. I often realized that although I was really hungry, if I went long times without eating that's when I actually felt the best...when my system was totally empty. But you can't go long without eating....so the cycle would start again. :(

0

Share this post


Link to post
Share on other sites
Ads by Google:


Were you taking antibiotics before you got sick? Thats what causes C-Diff infection. I have C-Diff but for some reason I dont have the hallmark "D" that goes with it. Last night I had a major attack though. I just finished antibiotic treatment for the c-diff Thursday and then last night I tried to eat some rice...took a nap...and got woken up with the worst cramps imaginable. I stayed in the bathroom awhile with "D" and cramps so bad I was dizzy and crying. Its rare that I get those bathroom "episodes" that I hear about so often on this board. After last night I'm really glad its not something I deal with on a daily basis. I thought I was gonna die. :(

Racheal, did they tell you to eat some yogert daily while you were on the antibiotics? I have found this sometimes helps stave off the D effects the antibiotics cause. Many will also use probiotics but I prefer the yogert to pills.

0

Share this post


Link to post
Share on other sites

Rachel--How awful :( --hope you're feeling better today!

0

Share this post


Link to post
Share on other sites
Were you taking antibiotics before you got sick? Thats what causes C-Diff infection. I have C-Diff but for some reason I dont have the hallmark "D" that goes with it. Last night I had a major attack though. I just finished antibiotic treatment for the c-diff Thursday and then last night I tried to eat some rice...took a nap...and got woken up with the worst cramps imaginable. I stayed in the bathroom awhile with "D" and cramps so bad I was dizzy and crying. Its rare that I get those bathroom "episodes" that I hear about so often on this board. After last night I'm really glad its not something I deal with on a daily basis. I thought I was gonna die. :(

Gosh, so sorry you had a rough night hope it's better today. How were the antibiotics for the C.Diff? I had taken about a month and a half of antibiotics (all of October and part of November) for Strep, ear infection, sinus infection and you name it, lol. Then in January I had a week of antibiotics for bladder surgery...the D happened around my surgery date. I've been on antibiotics about 20 times in the last 4 years, some for as long as a month at a time. Grrr! I always have "slight" D but this was a change from the normal and didn't seem to be going away.

0

Share this post


Link to post
Share on other sites
Racheal, did they tell you to eat some yogert daily while you were on the antibiotics? I have found this sometimes helps stave off the D effects the antibiotics cause. Many will also use probiotics but I prefer the yogert to pills.

I actually have been off dairy for awhile so no yogurt. I was advised by people on the c-diff forum to avoid dairy because it aggravates the problem....although some people swear by it. I didnt really have "D" while on the antibiotics. Its a rare occasion for me to get bad cramps and "d". I know it was from eating the rice. I do not do well with starches or carbs at all so I dont eat them very often. I was eating one type of brown rice hot cereal and seemed ok with it so ate it everyday but little by little I started feeling very toxic and having brainfog, skin and nail changes, aches and pains etc. :(

I started the Specific Carbohydrate Diet yesterday and I have a really good feeling about it. I'm just feeding the c-diff and other bad stuff in my gut when I eat the carbs so no more for me. The diet allows homemade yogurt and I've done well with it in the past so I'm gonna start doing that again because I do believe yogurt is very beneficial.

I'd have D but also be feeling like I was going to throw up, so I'd be sitting there with a garbage can nearby cuz I sure couldn't get up from where I was sitting!

Thats exactly what happens to me...I always think I'm gonna throw up and I put the garbage in front of me too! Since my "episodes" arent frequent I never think of "d" as a big symptom. My ex swears that when I was healthy I always had "d". I dont remember having it that often. I *do* remember that every single time I ate Kraft mac and cheese I'd end up with "d" almost immediately after but when eating other brands I was ok. I ate tons of mac and cheese back then. I never put two and two together about gluten because I'd never heard of gluten or Celiac. Also if my ex is right about me having too many "episodes" it certainly wasnt affecting my life cuz I dont even remember it. :huh:

0

Share this post


Link to post
Share on other sites

1.The important yoghurt is live yoghurt with a really heavy proportion of live organisms in it, they turn the lactose into galactose. They don't do anything to the casein though. Join a casein-free organisation, web site etc in addition to here.

2.Lactose intolerance often goes away or lessens. Gluten and casein intolerance don't.

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