• 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.

How Long Does It Take? Calling All Celiac And Dh Sufferers!
0

9 posts in this topic

Hello,

I have given up on Dr's or they have given up on me, I feel like a mental head case and am being prescribed anti-depressants.

For 3 weeks now I ave been gluten-free, and minimal milk. Can anyone tell me how long it takes/should take to see/feel benefit? Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

Because some of the symptoms are still around I am beginning to doubt myself. If I were to overload on wheat and gluten at this point - could it fire a response clear enough for me to believe - one way or the other?

Another question would be how long before all symptoms go??

Thanks in advance for all your help...

0

Share this post


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


I can certainly understand your frustration. Sometimes it can take a long, long time until you start to heal. A lot of it depends on how long you've been sick. The fact that several of your symptoms have gone away is very promising. Do know that it can take up to several years before you are back to normal (again, depending on how long you've been sick and the severity of it).

I've been on the gluten-free diet for 1 1/2 years and although some of my symptoms have lessened or gone away, my antibodies are still very high and I'm not responding to this diet like I should (and I have confirmed celiac disease). I'm rather worried about myself. But there's a big difference between being on the gluten-free diet for 3 weeks as opposed to 1 1/2 years! Good luck.

0

Share this post


Link to post
Share on other sites

Hello,

I have given up on Dr's or they have given up on me, I feel like a mental head case and am being prescribed anti-depressants.

For 3 weeks now I ave been gluten-free, and minimal milk. Can anyone tell me how long it takes/should take to see/feel benefit? Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

Because some of the symptoms are still around I am beginning to doubt myself. If I were to overload on wheat and gluten at this point - could it fire a response clear enough for me to believe - one way or the other?

Another question would be how long before all symptoms go??

Thanks in advance for all your help...

So sorry for your frustrations!! One thing you need to know is the DH sufferers are the most sensitive to gluten. You need to be taking Dapsone to effectively deal with the rash. You'll need to have your blood checked every couple weeks to monitor but it's worth it. I only needed to take the med's for about 2 months and now only as needed if I accidently get glutened. I have been on the diet for 2 years now with DH and the rash comes and goes and really let's me know if I eat the wrong thing. Stay strong and be vigilent about reading labels. Get the "Is that Gluten Free?" app. It's also been a life saver. Let me know if you have any more DH questions. I completely understand!!!

0

Share this post


Link to post
Share on other sites

For 3 weeks now I ave been gluten-free, and minimal milk. Can anyone tell me how long it takes/should take to see/feel benefit? Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

Hello!

You have had awesome progress in those 3 weeks!! Look again at your list of improvements.. and give it another 3 weeks. Then let us know how you are doing again. In 3 weeks from now you will have a much much better idea of whether gluten is your problem or whether you need to take another road. If you feel just as good or better then do another 3 weeks. And another and another. You can do it and in 3 MONTHS you might feel great like I do this week. (Itching mostly under control, GI issues mostly gone, brain fog started clearing last week or two etc)

0

Share this post


Link to post
Share on other sites

Hello,

I have given up on Dr's or they have given up on me, I feel like a mental head case and am being prescribed anti-depressants.

For 3 weeks now I ave been gluten-free, and minimal milk. Can anyone tell me how long it takes/should take to see/feel benefit? Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

Because some of the symptoms are still around I am beginning to doubt myself. If I were to overload on wheat and gluten at this point - could it fire a response clear enough for me to believe - one way or the other?

Another question would be how long before all symptoms go??

Thanks in advance for all your help...

Wow, you sound like me with the doctor thing (and we're not alone).

I also gave up gluten almost three weeks ago. I've been without dairy products for 2 weeks. Am I better? Maybe a tiny, tiny bit but my list of symptoms is long. At least one thing (the numb feeling in my left hand and left foot) have gotten worse.

I too, am becoming discouraged because I'm not magically better all of a sudden. Maybe I read too many success stories of people feeling better "immediately" or the next week, etc.

I also kind of feel defeated when I see people saying it may take months to feel better and years to completely heal -- but then I think of the alternative - not getting better at ALL. And if it takes months for me to come out of this feeling well enough to enjoy life again, then it will all have been worth it.

Not sure if that helps you or not since we're in the same boat, but let's stick with it a few more months and see where it takes us.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

It looks like you are making good progress. We don't heal overnight. It can take some time. Do avoid iodine also if you think you may have DH. Check all your toiletries also for gluten. I would not advise dapsone as it is very toxic and the DH will heal on it's own once you have been gluten-free for a while longer.

0

Share this post


Link to post
Share on other sites

So sorry for your frustrations!! One thing you need to know is the DH sufferers are the most sensitive to gluten. You need to be taking Dapsone to effectively deal with the rash. You'll need to have your blood checked every couple weeks to monitor but it's worth it. I only needed to take the med's for about 2 months and now only as needed if I accidently get glutened. I have been on the diet for 2 years now with DH and the rash comes and goes and really let's me know if I eat the wrong thing. Stay strong and be vigilent about reading labels. Get the "Is that Gluten Free?" app. It's also been a life saver. Let me know if you have any more DH questions. I completely understand!!!

I was on dapsone for 15 years for bechets syndrome but stopped taking it 2 years ago when i fell pregnant and aven't gone back on it - over the last year I have become symptamatic of dh but dr's don't listen. Im not symptamatic of bechets though! Will certainly look up the ap! Am due to see a dietician who wants me to go back to eating a normal diet because they're convinced it's IBS. Should I do that or remain on gluten-free? Sooooooo confused!

0

Share this post


Link to post
Share on other sites

I was on dapsone for 15 years for bechets syndrome but stopped taking it 2 years ago when i fell pregnant and aven't gone back on it - over the last year I have become symptamatic of dh but dr's don't listen. Im not symptamatic of bechets though! Will certainly look up the ap! Am due to see a dietician who wants me to go back to eating a normal diet because they're convinced it's IBS. Should I do that or remain on gluten-free? Sooooooo confused!

You have made progress on the gluten free diet so you might want to stick with it a bit longer. If you are having issues with what may be DH you might want to drop iodine for a bit and make sure all your topicals are gluten free.

If you do want to try going back to gluten you may find yourself feeling even worse than you did before you got on the diet. That is pretty diagnostic too.

0

Share this post


Link to post
Share on other sites

I'm 3-4 months in and seeing some big improvements of my (un-diagnosed) DH. Still itch but I know when I've had gluten or iodine and a bucket full of water and strict eating gets it before it is exacerbated with more & more gluten or iodine.

In the past couple of weeks I have been monitoring my use and reaction to creams/soaps and gluten-free products. As an initial avoidance of troublemakers I am avoiding anything that is production line product (bathroom/cleaning/food) that is white (except bicarb soda).

These are some of the ingredients I have seemed to react to but are not considered "gluten" by the manufacturers etc:

Xanthan Gum

Guar Gum

I now suspect anything with "Gum", 'thickener', "raising agent' and 'emulsifier' etc..

and E400 range of additives (eg Guar gum is a gluten contain plant from South Asia, it is E412)

I've tested many of the apparently gluten-free lotions etc with some bad, and some Very very itchy sleepless nights.

Here are some of the gluten-free products I have in my fridge/freezer/pantry that are from some of Australias well known and purchased 'Gluten Free' brands (macro/basco/oldtimebakery/orgran) :

gluten-free pizza base (includes: Salts 575,500; Vegetable Gums 461, 412; Emulsifier 471)

gluten-free Bread mix (includes: quote- "vegetable gume (guar, xanthan, 464)"

* both of these I have tested and don't agree with me

gluten-free Choc Mud Cake Mix includes: quote- "Thickeners (412, 415, 461 (Methylcellulose)), Raising Agent (450, 500), Emulsifier (471)"

*I'll be leaving this one for when my son, mum and neighbours need a treat !

gluten-free SR Flour includes: "Vegetable Gum: Guar Gum"

I've read enough of the raw product manufacturers information to know that xanthan and guar don't come out of their processes gluten-free. That is straight from the horses mouth. And xanthan gum is my skins evil-est of enemies. :ph34r:

Next week I am going to test my rice noodles/pasta/cakes. The more I read the manufacturers info the more I learn about how they use the gums (with 'great results') to bind so I suspect the lack of the E400s etc on label might be a problem or be appearing soon.

For the time being meat, salad and veg, fruit are my staples. Bicarbsoda for cleaning and washing.

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
      106,800
    • Total Posts
      932,543
  • Member Statistics

    • Total Members
      64,291
    • Most Online
      3,093

    Newest Member
    1Newtothis
    Joined
  • Popular Now

  • Topics

  • Posts

    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
  • Upcoming Events