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


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8 replies to this topic

#1 Sam81

 
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Posted 03 November 2011 - 03:49 PM

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...
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#2 Coolclimates

 
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Posted 03 November 2011 - 04:55 PM

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.
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#3 Preachergirl

 
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Posted 03 November 2011 - 05:47 PM

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!!!
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#4 Di2011

 
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Posted 03 November 2011 - 06:05 PM

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)
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#5 Tracy0504

 
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Posted 03 November 2011 - 06:39 PM

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.
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Self-diagnosed "possible gluten intolerant" mid October 2011
Gluten-free as of 10/17.
Free of all of the below since 10/25 to test for (at least) two weeks:
- Dairy, Eggs, Sugar, Corn, Nightshades, Citrus
Supplements: gluten-free multi, probiotic, sublingual B12 (1,000) 2x day
Lifelong insomnia and anxiety. Melatonin and (sometimes) Lunesta. No other meds.

#6 ravenwoodglass

 
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Posted 04 November 2011 - 02:38 AM

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.
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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)

#7 Sam81

 
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Posted 04 November 2011 - 12:11 PM

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!
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#8 ravenwoodglass

 
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Posted 04 November 2011 - 12:22 PM

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.
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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)

#9 Di2011

 
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Posted 04 November 2011 - 04:23 PM

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.
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