pricklypear1971

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.

I'm with you pricklypear.

She's seeing the psychiatrist to see if she can get some temporary help. She never had this problem(the fatigue) when she was on adderall. She's looking for something to help her stay up and keep her job while she tries to figure this out. I know that doesn't sound healthy, but she needs her job not just for money but because she loves it and gets a lot of her self worth from that. I wish it was as easy as just finding somebody who knows, but it generally takes a doctors visit and a couple hundred bucks for her to figure out if this person is worth seeing.

Will keep trying

I do understand. I could write a book about all the doctors I've tried. Most of us are in that same boat.

I guess, my fear for her situation, is that in desperation she'll settle for band-aids, not what will help her correct the problem, long-term.

And many times we get on meds that are really hard to get off of, and they mask the real issue.

I do understand she's just trying to make it through the day. We've all been there.

Just don't give up. I do want to share a link that may help: http://thyroid.about...oid-Doctors.htm

I have a half gene of both. I am genetically at lower risk than average (according to LabCorp)....yet here I am.

Worry less about risk, more about what works.

If gluten-free works, it works.

If you really want to know what's going on with your blood sugar buy an inexpensive blood glucose kit and strips (strips are the expensive part). Test before meals, 1 hour after, 2 hours after. Chart it.

I found I felt bad when I had the biggest swings. I never technically went hypo (even when I felt horrible) but it is documented people feel hypo without technically falling below the line.

You probably have poor glycemic control, which isn't good and could be interpreted as prediabetic if other blood work matches up.

The test they gave you is a poor one to measure what you're feeling, and if I read your op correctly it was years ago.

Lots of people order from NutsOnline. http://www.nuts.com/gluten-free/

To the OP, I hope you've been reading the responses to your other posts.

The problem isn't that you are/not absorbing sugar. It's about how many of us have side effects from celiac...ancillary damage.

I've been told its liver and pancreas and adrenal and hormones and thyroid (of course) all in a whacked-out loop that makes me trend hypoglycemic. Your body can't regulate the sugar as well as it should.

The better my adrenals, the more under control my thyroid is, the fitter I am....the less I am hypoglycemic. It all goes together.

It may be that his numbness is a symptom of cross contamination from gluten. Some people have severe neuro effects from gluten, and just because he didn't have these symptoms before doesn't mean he can't have them now.

Does he exercise? If he overexercises it could be a problem. lack of exercise can also cause oroblems. Has he seen a good massage therapist? Could it be a pinched nerve, etc?

It is also common, in celiac recovery, to go through stages. This could be a stage.

Could be a vitamin or mineral deficiency. Has he had a thorough vitamin panel? Most Celiacs have a few deficiencies that need supplementing - food alone usually won't resolve the deficiency.

It could be another food intolerance. That's common during healing. Some are temporary, others permanent.

The one thing Ive learned from this whole thing is to preface how I feel or my health with "right now". It helps to keep a journal - food, symptoms, etc. a journal can help him pinpoint what/when things happen.

Good luck to both of you.