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Gluten Free For A Year, But Have Couple Of Questions


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#1 Harpgirl

 
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Posted 04 June 2012 - 07:32 AM

It's been a while since I've been around here, so here's a brief catch up on me:

Due to a negative blood test, I'm diagnosed gluten-sensitive, but I still think it's celiac disease because grandma is diagnosed with it. I've also delt with bouts of random lactose intolerance before going gluten-free as well as anemia.

My questions are, when I do get glutened, are there any drugs I can take to alleviate the painful symptoms? I've been glutened back to back recently, and my hubby is getting frustrated that there is nothing I can take for it. Wine helps a little but not much and is not an option when I'm running after our 4 and 2 yo boys by myself during the day. WebMD lists predisone, but it looks as if that's for the autoimmune response to gluten. I'm going to see my dr tommorow, but I don't think he'll agree that's what I can take if he doesn't agree that I've got celiac.

My other question is, is there anything to help my mentral cycle? I was told that it would get worse in the beginning, but get easier later. It's seems to actually be getting worse. It's like getting glutened once a month. And I hope this isn't TMI, but for the last two months, it's like my body save most of the yuck for one day. I've been making sure that I'm close to a bathroom so that I can "change myself" every hour or two. Is that common among you women?
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Gluten free 6/10/11
Negative blood test for celiac 7/7/11
History, genetics, and response to diet point to celiac anyway.

Syan rest wear
feasceaft funden, he s frofre gebad,
weox under wolcnum, weormyndum ah,
ot him ghwylc ara ymbsittendra
ofer hronrade hyran scolde,
gomban gyldan. t ws god cyning! -Excerpt from the prologue of Beowulf. :)

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#2 MitziG

 
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Posted 05 June 2012 - 07:25 AM

Ok, time to step it up a notch. You should NOT be messing your pants once a month. You have to be much more vigilant about gluten cross contamination. If you are getting enough to make you that sick, that often- then you are damaging your body.

So...first, take a close look at home. Do you have shared condiments? Cutting boards? Drawers, cupboards or utensils? Do you have your own toaster? Everything that is for your use needs to have never been in contact with gluten. If necessary keep all of your stuff in a big rubber tote with a lid.

What about lotions, beauty products, shampoos? Toothpaste? Gluten lurks in many of them.

Are you eating out? Stop. Until you get this under control, the risk is too great.

Do you prepare gluten-containing foods for others in the house? Wear gloves and a mask. Or better yet- make the house gluten free. It isn't that hard if you just make whole foods. Other than bread, they won't even notice.

Is hubs eating gluten and kissing you? Drinking beer? He needs to brush his teeth if he does.

It is NOT ok for your bowels to be "dumping" (pun intended) all at once. That indicates there is an ongoing problem, likely regular cross contamination- just not enough to make you violently ill.

Now, for your other question. When you get glutened, a few things help. Gluten relief enzymes can ease the pain a bit, but I have found a couple of tsp of Braggs apple cider vinegar in a glass of water to work better and faster. It stops the pain almost instantly. Tastes bad, but relief is not picky.

Hot soaks in epsom salts also help.

Lots and lots of water to help flush it out.

Now...are you casein free as well? Casein is a big offender for a lot of celiacs, and removing it from your diet may help your bowel issues as well. You are on the right path, but don't be willing to accept what is happening to you. Celiac disease does NOT mean living in the bathroom!
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#3 Harpgirl

 
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Posted 05 June 2012 - 01:05 PM

Ok, time to step it up a notch. You should NOT be messing your pants once a month. You have to be much more vigilant about gluten cross contamination. If you are getting enough to make you that sick, that often- then you are damaging your body.

So...first, take a close look at home. Do you have shared condiments? Cutting boards? Drawers, cupboards or utensils? Do you have your own toaster? Everything that is for your use needs to have never been in contact with gluten. If necessary keep all of your stuff in a big rubber tote with a lid.

What about lotions, beauty products, shampoos? Toothpaste? Gluten lurks in many of them.

Are you eating out? Stop. Until you get this under control, the risk is too great.

Do you prepare gluten-containing foods for others in the house? Wear gloves and a mask. Or better yet- make the house gluten free. It isn't that hard if you just make whole foods. Other than bread, they won't even notice.

Is hubs eating gluten and kissing you? Drinking beer? He needs to brush his teeth if he does.

It is NOT ok for your bowels to be "dumping" (pun intended) all at once. That indicates there is an ongoing problem, likely regular cross contamination- just not enough to make you violently ill.

Now, for your other question. When you get glutened, a few things help. Gluten relief enzymes can ease the pain a bit, but I have found a couple of tsp of Braggs apple cider vinegar in a glass of water to work better and faster. It stops the pain almost instantly. Tastes bad, but relief is not picky.

Hot soaks in epsom salts also help.

Lots and lots of water to help flush it out.

Now...are you casein free as well? Casein is a big offender for a lot of celiacs, and removing it from your diet may help your bowel issues as well. You are on the right path, but don't be willing to accept what is happening to you. Celiac disease does NOT mean living in the bathroom!


Thank you for all your advice Mitzi, but I think I was misleading about my once a month problem and I totally blame my current "gluten brain" that I'm suffering from at this time. It's not my bowels "dumping", it's my uterus. I'm actually one of those that have constipation instead of diarrea, though I do get that too from time to time. I saw that vinegar trick on the forums yesterday and tried it. I definitely helped the nausea, but the gluten induced cramping is still there.

I saw my GI dr and he still believes that it's not celiac, explained that prednisone was more for the extreme cases that are on a similar level as cancer and that my symptoms, including my history with lactose intolerance and anemia, are non-specific. But he did give me a script for the cramping, so we'll see if that works.

The severe menstruation is probably a hormone imbalance which I had my suspicions about that anyway because I've also developed lots of facial hair. I'm going to see my gyn soon too.

The bottom line really is that I may just have to make my entire house gluten free. The longest I been able to go without an accidental glutening is about 5 months and I've always been able to tell how I've come across it, except for the last two times. I have my own cooking utensils, pots, pans, etc, but the rest of my family eat whatever they want. It'll take a lot of sacrific on my husband's part, because he hates getting rid of anything "useful" just to buy new ones. He also has a difficult time understanding that the plain cure for my problem is to stay away from gluten. Period. He believes that there has to be some kind of drug treatment for any ailment, which is what led us to the predisone inquiry. But after the last month and a half of my symptoms, I think he may be ready "cleanse" the house of all gluten.
  • 0
Gluten free 6/10/11
Negative blood test for celiac 7/7/11
History, genetics, and response to diet point to celiac anyway.

Syan rest wear
feasceaft funden, he s frofre gebad,
weox under wolcnum, weormyndum ah,
ot him ghwylc ara ymbsittendra
ofer hronrade hyran scolde,
gomban gyldan. t ws god cyning! -Excerpt from the prologue of Beowulf. :)

#4 Jestgar

 
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Posted 05 June 2012 - 01:50 PM

Sorry you're back. :(

My questions are, when I do get glutened, are there any drugs I can take to alleviate the painful symptoms?

Anti-inflammatories? Imodium?

What are the issues you need to get through?
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#5 MitziG

 
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Posted 05 June 2012 - 02:10 PM

Now that I re-read your post it makes sense. I just read it too fast the first time, sorry!

As for periods..argh...what a pain. Mine is so ridiculously unpredictable in heaviness- I feel your frustration. I have been having some success with saw palmetto though. With the hair growth too though you may be looking at PCOS, so definitely see your obgyn.

As for your negative celiac test- guessing the full panel wasn't done anyway. With grandma having it, I am sure that is your issue as well. And of course your doctor doesn't think celiac is your problem. They never do. Sigh...
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#6 cavernio

 
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Posted 05 June 2012 - 06:03 PM

If you are only gluten sensitive and not celiac, anti-inflammatories might not even work for you anyways.
Be thankful your period problems are only 1 day a month. And 2 months isn't even enough to be called a pattern really. Another 2 months and you might be a lot better, just wait and see.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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