pricklypear1971

You are not gluten free if you aren't avoiding cc like toasters. Those tiny bits of gluten are enough to cause an autoimmune reaction.

Don't worry about other diseases, etc. till you master gluten-free. Yes, you can get more sensitive over time. What you're experiencing is not "increased sensitivity". What you're experiencing is an autoimmune reaction because you aren't completely gluten-free. Your body is ticked and is telling you.

It's better to reevaluate what yours doing than deal with a second ai disease . You can do it.

Small update....

We met with the gastro on Friday, who is now bringing the scope on the table sooner  than later in response to the allergist's plan.

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues.  I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.

Excellent news things are moving forward.

I would INSIST they take samples for Celiac testing while they scope.

Yes, we get it. Unfortunately .

Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry.

Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative, IF a doctor was suspicious.

You're left with setting your jaw and plowing forward with gluten-free if you're lucky enough to figure it out on your own.

So, we get it. Feel free to vent and scream and ask questions. I sincerely hope this is your answer because chronic mystery skin diseases can be  horrible to live with.

Please do NOT underestimate the power of a gluten-free and low iodine diet in the beginning, if this is dh. High iodine foods made my rash flare hideously, even while strictly gluten-free. Not everyone is as sensitive to iodine as I was - and quite frankly, that sensitivity was enough to "seal" my dx...

Good news, if you are iodine sensitive you may find it a drug-free way of controlling the rash. I was strictly low iodine two weeks, then started adding back slowly. I found I was more sensitive to certain high iodine foods - egg yolks, carrageenan, asparagus, potatoes. Everything else I could tolerate quite well. I think iodine is cumulative - so I ramped up intake over 3 months, and by then I was able to eat anything but gluten.

Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination".

Also, if you are dealing with dh, you may try a period of low iodine to help push it into remission. I suggest the thyca.org diet, sans gluten. Google it.

Thank you pricklypear and squirmingitch,

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

You know, it doesn't have to be DH to be a gluten related rash?

There are hundreds of gluten reactions - this may be yours. It just may not be DH.

Read the dermatitis herpetiformis section of the forum. See if rings any bells.

If you are undergoing celiac testing DO NOT use steroids for the rash. It will interfere with testing.

I saw my PCP.
The itchy buttock rash was gone when I saw him.
He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

Completely untrue, in my experience, at the beginning.

Beware - when it decides to stay, it's hellish.

That said, it wouldn't disappear daily. It would stay a week or two, vanish. Then 6 months, vanish. Then, it didn't go away....

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that  is similar enough since her issues are prominently gastro related.  Just being clear that I am fully aware that celiac is not an allergy.

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.
I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.



I am sure that my health deteriorating is due to the stress and focus on hers right now.  But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

i need a nap.

Honestly, I don't think you can determine if she has allergies vs. intolerances at this point. Allergies can be missed during testing, and there aren't reliable tests for intolerances. Over time, an allergic reaction may become crystal clear, unfortunately.

I wouldn't be surprised if all the testing comes up with no definitive answer...just evidence of reflux and gi irritation.

I truly think you'll have to take the issues into your own hands - elimination diets for all, to come up with answers.

I do hope the testing yields helpful information. All of you have certainly suffered enough.

Autoimmune disease, if you haven't dealt with it prior to a Celiac dx, can be difficult to get your head around.

There are two aspects to Celiac, IMO. The obvious food related impact (what you eat, impact of eating what you shouldn't); then there's the autoimmune response....which means gluten is damaging your body: potentially all over - all tissues, all systems, even your brain.

So, if you want to lessen the wear and tear and potential life-limiting damage you must stay gluten-free. All the time. Gluten, for a celiac, can be an invisible and silent poison.

And I don't know if this other bit is good or bad; however, you probably won't remain asymptomatic after ingesting gluten. Happens to alot of us. When you get off gluten for a while your body screams loudly when you ingest it (accidentally or on purpose). So, I don't suggest purposely eating it (once you get off it) when you don't have the latitude to sit in the bathroom/bed and cry for 24 hours.

Just stop taking it and see what happens. That's what the doc will tell you to do, most likely. Probably some blood work.

When I've had reactions to meds they always say stop taking it, not much after that. In this case if the symptoms go away after you stop at least you'll know the dapsone is doing it and can ask for alternatives.

You need to contact your doc ASAP. Dapsone can have severe side effects....

There are some alternative therapies you can try.

At a certain point, excluding an alternative credible diagnosis, you've got to just go gluten-free and see what happens.

You've got to read about how celiac testing can come up falsely negative, see how it may apply to you...and then do what you need to do to get healthy.

Honestly, family and friends will do what they'll do, regardless of what a doctor says. Heck, my mother has so many food issues now (compared to eating everything under the sun when younger), admits "gluten is probably an issue" - and then refuses to get blood work, testing, or try a gluten-free diet. So I just sit there, in utter awe of how she continues to abuse her body...

And having a dx will do nothing to "educate" friends or family when you eat out or at their homes. A doctors pronouncement does not deposit understanding, knowledge, and gluten-free cooking skills directly into their brains.

A dx is not a magic bullet. Going gluten-free may be.

Screening out soy is worse, IMO, than gluten. When my son was an infant he seemed to have issues with milk and soy formulas so I dropped both from my diet.

Painful.

I feel for you, but I'm glad you're getting somewhere.

As time goes on, some people get more sensitive. That could be it. You could have developed another food sensitivity, some do.

My sneaking suspicion is thyroid or another AI disease - perhaps triggered by pregnancy/childbirth/motherhood. Docs like to chalk exhaustion, etc. up to motherhood but truth is motherhood is a trigger for AI diseases and they hide behind the guise.

So, perhaps keep a food log, and ask for a complete thyroid work up - tpo antibodies, tsh, free t3/t4. It is not uncalled for - having celiac is reason enough for a work up.

If it isn't your thyroid, I'd dig Ito the food log and consider you are going through an "autoimmune phase" - meaning you are struggling to recover from pregnancy, etc.

Your body has been stressed. Motherhood does that. Your body just did something monumental.

The reason I bring up thyroid is that it happens (when it happens) quite frequently after childbirth. And the symptoms heavily overlap with Celiac. And from personal experience. In retrospect, that's when my thyroid started nosediving.

I think you should make her a deal. You'll eat a bite of gluteny food if she eats a bite of arsenic. Sounds square to me.