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pricklypear1971

Member Since 24 Aug 2011
Offline Last Active Private
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#879117 I Have So Many Questions

Posted by pricklypear1971 on 11 July 2013 - 05:47 PM

Okay, like squirmy said, breathe.

First, lack of nutrients could be causing the poor hair growth. That said, I reco a thorough thyroid work up including antibodies. You are autoimmune and thyroid is an obvious thing to watch.

Second, as squirmy said, you may not flare like this for two years. I have flared but they are a FRACTION of what they were - quite livable. As the antibodies fall the rash lessens. My last outbreak was no more than a minor irritation, and the intensity fell drastically in the first few months after going gluten-free and li.

Third, I'm allergic to sulfa and never tried dapsone.

Fourth, ice packs and pressure at night to help you sleep. Coat your body in ice packs.
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#875980 New Doctor, New Diagnosis? Rule Out Dh?

Posted by pricklypear1971 on 22 June 2013 - 06:59 AM

That's great news, that you've found a doctor to work with.

I had what they thought was a yeast rash on my chest after mastitis. I was on multiple rounds of diflucan to no resolution...rash went away immediately when my milk dried up (9 months).

Obviously, a hormonal element to it. I've wondered many times the rash was related to gluten.

I have had my dh flare during a virus, and one time tweaking my thyroid meds....so I wouldn't be surprised if my boob rash was linked to gluten/dh.

And I agree, most rashes look the same. No wonder derms shrug and toss you an rx of steroids...
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#875780 I Got Sick

Posted by pricklypear1971 on 21 June 2013 - 05:33 AM

You can't ever assume something is gluten free. This is the sucky thing about eating gluten-free: spontenaity goes out the window.

You will compile a list of safe junk foods after a while - snickers, sodas, etc. but don't EVER assume something is gluten-free. You must always KNOW. If you can't read the ingredients or get confirmation do NOT put it in your mouth.

Ps - We ALL have done this at some point. Don't beat yourself up over it. Gluten is going a good job of that already. Hope you feel better soon.
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#874924 I Can't Believe That Just Happened......

Posted by pricklypear1971 on 16 June 2013 - 03:05 PM

I actually think the problem with the co-worker is that they are a piss-poor advocate for their own health and the gluten free community as a whole.

Distinguishing between people with celiac and NCGS in terms of diet, compliance, and how they eat is not only unproductive but destructive to our community. There are many here who are diagnosed NCGS who were every bit as sick as some of us who are "gold standard" biopsy diagnosed celiacs. Many more simply could not withstand a challenge and got a NCGS diagnosis while they may very well have celiac. Many of these in both categories get every bit as sick as someone with celiac from the most miniscule amount of CC.

Let us refrain from dividing the community and recognize this for what it is. An uneducated person, fad dieter, or moron eating where they shouldn't.


Or someone that doesn't have obvious reactions and can't tell they've gotten into gluten. In the beginning I couldn't....took a while to figure it out.

But I did know how to recognize a risky situation if I saw it (like Subway). Kitchens where I can't see what's happening require a leap of faith.
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#874888 Am I Still Healing Or Is It Cc

Posted by pricklypear1971 on 16 June 2013 - 09:45 AM

It took 9 months for me to reach some level of predictability. 18 to feel stable.

You'll get there. Don't assume you're doing anything wrong... It does take time.
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#874868 Help, What Am I Reacting To?

Posted by pricklypear1971 on 16 June 2013 - 08:00 AM

Remove all possible offenders for a few weeks. Add each one back one at a time. Watch what happens.
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#874820 Celiac Equals A Lonely Life

Posted by pricklypear1971 on 15 June 2013 - 07:23 PM

I'm trying to battle my depression with diet and exercise since medications caused me severe neurological problems. However, the Celiac isolation is making it so hard to combat the blues. I just learned I wasn't invited to family function because they didn't want to worry about my diet (even though I bring my own). This seems to be the trend. My friends don't have me over anymore and now my family is excluding me. This disease is so hard mentally.


I know I sound like a broken record, but has your thyroid been screened? Not just tsh - but free t3/t4 and thyroid antibodies? That could be contributing (or solely responsible for) your depression.

There's no doubt Celiac can be isolating. Adding depression on top makes it that much more difficult, I'm sure.
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#874721 Not Wanting To Attend Any Social Functions Involving Food

Posted by pricklypear1971 on 15 June 2013 - 09:53 AM

Went to a pot luck event last night with a large group. I pulled out my baggie of stuff and someone commented on why I wasn't eating with everyone. Of course the table goes quiet! I just said "I have celiac which means I can't have any wheat, rye, barley or oats and can't risk cross contamination so I bring my own stuff and then I can enjoy your company". One person replied :Oh I'm so sorry" to which I said "I'm not,. I feel great. How was your day...." . All very pleasant and the topic was quickly off of me........ to all of you I will confess that inside I was really wanting to say....What difference does it make...mind your own business!! lol :rolleyes:


Perfect. I've found it's all in the attitude.

But I hate. And I do mean HATE "I'm sorry", or "oh, that's terrible". You know what's terrible??? Being sick. And listening to other people who are sick, when they complain of symptoms that you know have a strong chance of being food related (and watching them shove that food down their throats).

That's terrible. That's who I feel sorry for.

Me, I'm BETTER!
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#874116 The Stuff Doctors Tell Their People...sad

Posted by pricklypear1971 on 12 June 2013 - 06:43 AM

What patients are told, still mystifies me. This is from a friend....

"Lisa, you are in worse shape than me if you have Celiac. i was heading in that direction and my doc told me if I didn't get off gluten that would probably be my final outcome. Basically, I was having an auto immune reaction to gluten. When I ate it I hurt all over...like rheumatoid (sp) arthritis. Gut also messed up all the time. Anyway..I could go on and on. Feeling so much better though."

...stupid doctor!


This sounds like one of the new explanations about ncgi??? Have no idea if your friend went through traditional testing, but we read/hear explanations like this all the time on this board re: ncgi.


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#873894 Mrs. Dash Table Blend?

Posted by pricklypear1971 on 11 June 2013 - 05:56 AM

I'd keep a food and activity diary. I've found viruses break me out, as well as starting increased t3 mess for me thyroid (along with a strenuous massage). In short - I changed things in my body and the rash was a protest.

It isn't always food.
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#873893 Another Symptom I Didn't Know I Had

Posted by pricklypear1971 on 11 June 2013 - 05:52 AM

I have a bizarrely heightened sense of smell and I often ask the hubs"don't you smell THAT?"..meaning dampness, musty smell, burning, whatever.
He (of the stuffy nose) says "nope".

I would not describe it as worrisome, but maybe bothersome. then again, when it is something pleasant, I get an extra boost of it.

I just have an acute sense of smell.... also, I am a supertaster...also my hearing is beyond acute..... I am like a damn bat.

This made it difficult for the students in my class when they whispered anything I was not supposed to hear. :)

Not sure it is a celiac symptom...or a post- DX "better sense of everything sensory" that was once dull by illness or just "me". Could also be a chemical sensitivity? Could be anything.

None of us are doctors and it someone has a scent allergy that makes them nauseous or other symptoms that are concurrent, they should seek medical attention.


I've developed a theory that since my body was so damaged, it heightened other senses to substitute for the damaged "parts".

Sometimes that was good, sometimes it wasn't.

I think the body compensates in some weird ways. Pretty amazing, what the body can do, though.
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#873642 Mcdonalds

Posted by pricklypear1971 on 10 June 2013 - 08:08 AM

http://www.mcdonaldsglutenfree.com/


Note that is not a link to the official mcDonald's website. While the info may be good, it may not be up to date. I would always double check with McDonald's.
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#873542 Chickfila?

Posted by pricklypear1971 on 09 June 2013 - 04:01 PM

Thanks for the input. I agree with yall, it is just too early for me to be eating out. I am not going to eat out again for a very very long time. It is hard because we are always on the go, but I am just going to have to find a way to make it work. This disease is really a difficult thing to deal with. Its discouraging because its SO hard and just knowing that it is permanent is frustrating. Oh well. I am committing today to not eat out for a very long time in order to give my body time to heal. Thanks for all your support! I have been dealing with feelings of depression lately because the reality of my diagnoses has set in. Knowing that I will never go out for pizza again, and that I will never be able to eat at family get togethers, and that I will never have my favorite deep fried, breaded buffalo wings again, and that I will never be able to eat anything that anyone else cooks for me ever again, etc etc ( the list goes on and on) Is so discouraging! Oh well. I am just going to take it one day at a time knowing that it is not a choice, it is something I MUST do in order to have a healthy life. I am glad that all of you can relate to what I am feeling :)

I just realized how much I just rambled haha. Oh well. I say all this to say that I am NOT eating out for at least 4-5 months so that my body can heal....Thanks for all your input!!


It can be difficult in the beginning. I ate out, conservatively....in the beginning. You CAN eat out, just not reliably. You could try to eat out at a "safer bet" place - a place you've heard from other local gluten-free'ers is reliable. I've never put fast food in the "reliable" category...well, maybe specific In n Outs and one Chipotle.

My point is that you can try it. Just don't read too much into it. And the more you try it, and "practice" screening gluten-free and asking questions at restaurants the better you'll get at it. There is a learning curve.
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#873482 Confusing Genetic Test Results - Help!

Posted by pricklypear1971 on 09 June 2013 - 10:37 AM

Thanks, everyone. That makes sense, pricklypear: I have half of a celiac gene. I need to brush up on my chemistry and biology...

I am 1/4 Irish. I'd be interested in that article, stanleymonkey, if you happen to come across the link.

Prometheus Labs, unfortunately, will not discuss results with patients and will only release the info to doctors. I hadn't even realized that my doctor ordered the genetic tests. I hope that the half-DQ2.5 gene plus symptoms will be enough to get the GI to do an endoscopy. I'm glad my daughter is ahead of me in the diagnostic process - it should help my doctor to take this seriously if I go in with documentation that a first-degree relative has celiac.


Remember, she can get more genes from Dad. My son has half a gene from Dad that I don't have...which leaves the question if hubs has a whole gene....

And I wouldn't do gene testing on your daughter yet - some docs will EXCLUDE celiac if the gene test isn't fully positive. So, it can work against her.
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#873064 Rash Flare Up?

Posted by pricklypear1971 on 06 June 2013 - 02:10 PM

I don't know, other than a glutening. Many have reported a dh type rash after going gluten-free, then doing a challenge or getting glutened.

I'd look for sources of cc, or think back to your last glutening....

If you think it's dh, you may try a low iodine diet to see if it helps it go away. Most dh is iodine sensitive - and it sure contributes to mine worsening if it flares up. Try the thyca.org cookbook (online/free) for how to go low iodine.

There are other gluten related rashes, and other skin diseases are common in the autoimmune challenged.
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