How long for DH to develop?

[Phaeri]

Hello all,

 

I am new in this forum. The reason I joined is because I am trying to find an answer.

I have constipated IBS and celiac was ruled out by blood tests. I am aware blood tests can often give out false positives. But I have been doing well with oats and little bread (like 1 a week) and some bakes here and there. 

Until my recent flare-up. I am not sure what triggered it but let's say the food at my workplace is not very IBS-friendly. I always try to bring my own but some days I just have to eat something even if I did not had time to cook.

During that week I started to feel nauseous and I could barely eat for longer than a couple of spoonful until my stomach started to burn and my appetite completely gone.

It's week 2 now and the only thing my body is happy with is potatoes, meats and many vegetables. (Fruits are a no no.)

Around the same time my boyfriend noticed how I kept scratching my neck. He said I had many bug bites on it, about 4 or so. (Back of neck and scalp.) And 1 new one on my collar bone. They itch like mad on and off. I only bled 1 but now I try to stop myself from overstretching. After some research trying to find out if IBS can give me a skin rash if flaired, I came accross DH. They looked exactly like the ones I have. We thought they were just bug bite and a mosquito sneaked in escaping the cold outside. However, today, as I write this, I have 2 new spots on my neck itching. I am convinced it is not bugs.

I've seen horrible pictures of DH online. If it is indeed DH, how long does it takes to develop into an "alarming" phase? (reason to go to the doctor.)

My boyfriend is calling gluten issues as he sees my disgust with bread when I have flares. I could barely eat half of my beloved home-made porridge. I told him the doctor ruled that out and he is still doubtful it was correct as I never get better. It's like a rollercoaster, good for a month, bad the next, good again the next.

I never had these before so it really surprise me. I am curious as well if IBS could eventually develop you into gluten intolerance?

 

[Posterboy]

Phaeri,

I don't know of any "timeline" you asked about (maybe others on this board can help)  but I had a friend who had never had the celiac rash "dh" until he was off gluten for a year and decided to cheat with a beer to celebrate one year of being gluten free.  but i think for most people it is the intense bone deep itching that promps a visit to the doctor for relieve or declare to never cheat with gluten ever again.

One beer won't hurt could it.

And he had the Celiac rash and it has been his last beer or gluten anything since.

I don't know if this helps or not but if you think it from gluten it probably is even if your blood work is a  false positive.

If your work is not ibs friendly it is probably not gluten friendly either but you have to be your own advocate.

Eat mix nuts everyday if you have too since fruits (fodmaps) seem to be out of bounds or eat popcorn etc.

There are more options than you are probably given credit for if stop and think.  A can of gluten free soup everyday or swap between a salad and soup as an example.

  I know if your are creative you can find something you like that you don't mind eating everyday that is gluten free for a month to see if going 100% gluten free for a month helps.

I have had a nice chili at Wendy's many a day when I dreaded finding a gluten free option.

Just my two cents worth.

As far as the chance IBS will develop into a gluten allergy.  Chances are it probably already has if you are developing the "celiac rash".

https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

From the link read it for yourself "Numerous studies have shown that a high percentage of patients with irritable bowel syndrome (IBS) are also sensitive to gluten" . . .  .

"Nearly 84% of the gluten-free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group (p < 0.001).

This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.

The team suggests that the term of IBS might be misleading and may change or delay an "effective and well-targeted treatment strategy in gluten sensitive patients."

Good luck on finding something that works for you.

Posterboy,

 

 

[squirmingitch]

60% of those with dh test negative on the celiac blood work.

Blood work doesn't really give out false positives as you stated but it can give false negatives.

The best way to find out if it's dh is to go to a derm & have a dh biopsy done. This is taken adjacent to an active lesion not on one. If they take it ON a lesion, then they are doing it WRONG.

A diagnosis of dh IS a diagnosis of celiac & no further testing is needed. You must be actively eating gluten for the dh biopsy & it sounds like you've been off & on so you need to eat a slice or 2 of bread (or the equivalent) per day for 12 weeks prior to the biopsy. Oral steroids or steroid shots within about 2 months prior will skew the biopsy results as will steroid creams within about 2 weeks prior to the biopsy.

There is no timeline before the dh rash presents. It is an individual thing. 

[Phaeri]

Thank you for the responses.

I guess I will have to endure normal eating for a while (including bread) and see what happens if the rash eventually disappears or gets worse.

Or if it is a temporary sensitivity reaction whenever my guts are not functioning properly.