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"severity" Of Dh/celiac?
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Hello!

 

I have been on and off these boards for years, because I keep coming back to having signs that point to Celiac.  It all started 10 years ago, I had just weaned my daughter and hormones resuming their cycle.  I woke up one morning feeling like I had a stomach virus and struggled for the next 2 years with intense nausea, fatigue, anxiety, insomnia. 

 

I lost 15 pounds and then gained more.  I'd not eat for days, then eat again because the nausea went away, start again with the nausea and repeat.  I gained weight.  My husband and I decided to do "South Beach" and for the first time in YEARS I felt good.  A gluten connection was suspected, but my doctor had written me off as a nutty basketcase. 

 

I pressed him to do an endoscope, but was ill-informed and had eliminated a lot of gluten products.  It came back negative and he told me I do not have Celiac disease, that I was depressed (YOU THINK?). 

 

I know the obvious answer would have been to eliminate gluten but to be honest, I couldn't do it.  Without a "confirmed" diagnosis, people just thought I was crazy, and the effort collided with my family life.  So I learned to walk the line - I knew my major triggers (condensed soups, seasoned and packaged things, processed meats) so I avoided THOSE.  For the past year I have been avoiding processed stuff, but not necessarily eliminating gluten-containing foods and I feel fairly good.

 

However, I have episodes when I eat poorly for repeated days in a row - mostly holidays and such with repeated meals that I don't prepare - where I get what I have always termed "hives".  They are nearly always on my feet or lower legs, and they tingle/burn like fire ants but itch like MAD.  Worse than black fly bites at their worst.  I won't get loads of them - a cluster or two on the arch of my foot, between my toes, on my ankles, sometimes my hands.  They welt up like hard pimples and then I scratch them to scabs. 

 

I have finally come back here to look for pics of DH and caught something about MSG and salicylates, and this makes a little sense.  For the past year I've known that bread alone isn't that bad of a trigger, but if I have something with what I term "chemicals" in it, I am in big trouble. 

 

So can someone please tell me if it makes sense that I would be able to eat some gluten here and there and be OK, but if I have gluten PLUS chemical-laden food that it would trigger a DH outbreak?  To be honest, I know mentally I would eat very well if I had a confirmed diagnosis, and that would be accepted. 

 

For 10 years I've been considered the wacky one in the family that chooses not to eat certain foods when there's nothing "really wrong" with me.  If I knew it was likely, I'd schedule an appointment with a dermatologist and load up on the foods I know would cause this a week before and walk in and ask for a biopsy.  I've never deliberately tried to set this off, but I think I could.

 

Suggestions and comments welcome.

 

 

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Oh boy.  I think I answered my own question.   I looked up foods high in iodine after reading a bit more here. 

 

First off I had an omelet Thursday night.  Then Friday night I had Sushi.  What is #1 on the list I read?  Seaweed!

 

Am I on the right track?  Would it show up that fast?  I dnol't have oozing blisters (that I have noticed)

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Hi Krystal, just the description of what happens sounded exactly like how my DH started and felt. And I'm not sure about the combination of gluten+msg etc, but it is worth remembering that those of us with DH don't often get the severity of illness from the gut suddenly after ingesting gluten. Mine is definitely a gradual build up. Some people can tell straight away,even with DH. I cannot. So it could just be a function of the build up process...also if you are really serious about doing the gluten challenge, you'll need to have some good 'active lesions' and make sure your derm biopsies from beside the lesion, not the lesion itself (my derm did both!) And I totally hear you about having a confirmed diagnosis for your own mental strength. it was extremely validating for me. Lots of people do fine without it, though. Let us know how you get on.

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krystal:

 

Why are you thinking there is a connection to iodine?

 

I think it would be wise to see a good nutritionist, naturopath, or doctor who knows a lot about these kinds of things (hard to find) about your symptoms because it really could be a number of things. It's very possible you have sensitivities to foods or substances other than gluten, or in addition to gluten. Good luck <3

 

In the meantime you could start keeping a detailed journal about what you eat and your symptoms.

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krystal:

 

Why are you thinking there is a connection to iodine?

 

I think it would be wise to see a good nutritionist, naturopath, or doctor who knows a lot about these kinds of things (hard to find) about your symptoms because it really could be a number of things. It's very possible you have sensitivities to foods or substances other than gluten, or in addition to gluten. Good luck <3

 

In the meantime you could start keeping a detailed journal about what you eat and your symptoms.

Iodine often makes DH worse.

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Iodine often makes DH worse.

true dat.  fish and shellfish used to make me flare up - also ibuprofen but i can't remember why...

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krystal, Yes, iodine is key. And IMHO you should certainly be actively seeking a dx. This means loading up on gluten & possibly iodine too so you get a nice (did I say nice?) good (did I say good?) outbreak. I can't even believe I'm urging someone to deliberately head for hell as fast as they can!!!! :o But If it were me, wanting an official dx as badly as you have expressed, then I would load up for not 1 week but 3 or 4 weeks. And remember, only 40% of us with dh test positive on the blood work so you need to find a derm who is skilled & knowledgeable in doing biopsies of dh. If you're going to do this thing then don't go into it halfway ~~~~ go for broke & IMHO that is NO LESS then 4 weeks of gluten loading. 

No, you don't have blisters YET. But they are actually there, underneath the skin, laying in wait & ready to go off like bombs. That will be your biggest problem with a derm ---- convincing them to do a dh biopsy when you don't present with obvious blisters.

 

Good luck & let us know what happens. And we will be here for any questions, rants, or pity parties. I don't think there's a one of us who hasn't done all 3 & more than once.

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Iodine often makes DH worse.

Oh I see, thanks, I didn't understand what she meant, thought she was saying she now thought she had an iodine allergy and not a gluten allergy.

 

. . . . .

 

I agree with squirmingitch in that if you want a proper diagnosis (or to rule out Celiac) that you're going to have to load up on gluten unfortunately. 

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
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