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Hidradenitis Suppurativa


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4 replies to this topic

#1 LindsayO

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Posted 24 September 2011 - 11:30 AM

Just looking for some input/experience from members diagnosed with Celiac's and HS. I have had HS, now at about a stage 2, since middle school (I am now 25). Nothing has ever helped it. Not lancing, not abx, not extreme weight loss (100 pounds). It has been a huge problem for me. I had been (mis)diagnosed with irritable bowel synodrome for 6 years. After a terrible terrible stomach ache and hospitalization my gluten intolerance was discovered and Celiac's diagnosed. That was in June and I have been gluten free since. My HS seemed a little better without gluten but not in any way cured.

Was wondering if anyone else has experience with this?
How long for improvement in the HS without gluten?
How is your HS now?
If your HS went into remission, how long and has it stayed that way 100%?

Thank you for ALL your imput and feel free to ask me questions, I'm an open book, I've dealt with this HS forever and tried almost everything aside from surgery.
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#2 ravenwoodglass

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Posted 24 September 2011 - 01:06 PM

I do seem to recall other topics about HS. You might want to do a board search to see what others have had to say about it. One thing you may want to do if you haven't alreay is make sure you have eliminated gluten from topical items like lotions, shampoos etc. I don't know if it would help but it won't hurt. I do hope this resolves for you as I understand it can be quite painful.
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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)

#3 pricklypear1971

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Posted 24 September 2011 - 01:43 PM

If there is mast cell involvement cromolyn cream may help. It helped stop some itching for my DH.

Recipe at http://www.chronichi...omolyncream.htm
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 nora_n

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Posted 16 October 2011 - 03:13 AM

here is one of the discussions about HS http://www.celiac.co...rativa-anybody/
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#5 nora_n

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Posted 16 October 2011 - 05:51 AM

here is a huge discussion on hidradenitis suppurativa: http://glutenfreeand...der=asc&start=0
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)


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