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I am a 36 year old female and was diagnosed with Celiac Disease in October 2011. It took 2 years to figure out why I was losing weight involuntarily, tired all the time, and increasingly anemic as time went by. I tried to tell myself I always felt bad, tired, and had no appetite because I didn't exercise enough, stayed up too late, and ate all the wrong things...plus I work full time and have two very busy adolescent children (who wouldn't be tired?!?!).

Anyway, after the diagnosis, I have tried really hard to be gluten-free. My iron saturation level was 5% so I had an iron infusion at the end of October and was feeling great for about a month. Recently, I have gone back to feeling very tired and achey. Also, my skin just hurts to the touch. If my husband even rubs my arm it makes me cringe because of the pain. These all seem like symptoms of gluten contamination (the skin thing is new to me). I haven't checked my meds or makeup for gluten but I didn't seem to react to them at 1st when I cut the gluten-free foods so why would they matter now. I just can't see how they would have a gluten level so high that they could make that much of a difference. I am confused about how to determine the level of sensitivity and how careful to be. Is it true that once gluten free one can become more sensitive over time if exposed? Is this all in my head?!?!?!

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Hi and welcome. Don't doubt yourself.

Your immune system can find and kill a single virus. What makes you think it would miss a particle of flour that is a hundred times larger? Or a crumb which is enormous in comparison?

Many people have stronger reactions to gluten once they are gluten-free. Around the board we think it's because your immune system is no longer under constant onslaught so it can function normally. A normal immune response to an invader is pretty strong.

Check your makeup, shampoo, and conditioner, check your meds, check your pet foods if there's kibble around the kitchen, get yourself separate jars of mayo, jelly, and other spreads so your family doesn't have to worry about getting crumbs in them. You also need a separate gluten-free cutting board and pasta strainer (they're really hard to clean) and never, ever bring wheat flour into the house. That stuff leaves a fine dust of gluten everywhere. Get a separate toaster, toaster bags, or clean off a toaster oven rack every time you make gluten-free toast. Don't kiss your hubby after he's just had a slice of pizza or share a water bottle if he's eating gluten foods. All these things have made people on the board sick!

Good luck troubleshooting!

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Recently, I have gone back to feeling very tired and achey. Also, my skin just hurts to the touch. If my husband even rubs my arm it makes me cringe because of the pain. These all seem like symptoms of gluten contamination (the skin thing is new to me)..... Is this all in my head?!?!?!

Skylark pretty much answered you fully about why it may be happening, but I'd like to add that I suffered this horrible skin pain, burning sensations and joint/bone and muscle pain and parasthesia for 3 + years before DX. It is awful and so, I commisserate. It is only in the last few months (of being gluten free for 11.5 )that it has started to subside.

INFLAMMATION is the reason.

I feel for you, I really do--- as even having the cat walk across my legs was painful :blink: as was clothing and rubbing myself dry from a shower. No one could grab my arm or rub my back even though I begged for massages because my muscles were tight and full of knots and weak from celiac--ouch! Laying my cheek against the pillow HURT. Sleep was nearly impossible for a very long time as was sitting. It was just horrible.

Yeah, I was examined by dozens of medical pros and none of them could explain it and I was looked upon as "crazy" a few times, I am sure.

It was all from the celiac.

But it's better now :) and certainly less painful--although one CC episode, and it flares right up!! I get massages and have physical therapy to get me back to functioning, so it does subside in time.

Are you sure there is NO cross contamination going on?

Don't give up, hon, healing takes time. Best wishes.

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I agree with the others. Think of it before as a constant "sickness" your body was fighting. This evil invade was being attacked all the time which as we all know when we have a bug makes us tired, achy, and the longer this goes on, the more worn out the body gets. It is all interesting except for the fact that the evil invader should just be ignored.

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yep, you most certainly will be more noticeably sensitive to gluten now that you're gluten free. After years of your body attacking itself, and inflammation caused by constant in-fighting, your body goes numb to it after a while. Now though it's going to be on the alert more immediately. I tossed out everything in my house that had gluten in it. Make-up, lotions, shampoos, conditioners, dog food, pots and pans that were scratched...everything!

Plus, it's only been a couple of months. It can take years to heal your intestine entirely, and some people never fully recover. Depends on how long you've had it, and how much damage there was.

Hang in there! It gets easier.

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Thanks for all the helpful information. I am just now logging back on to the forum. It is nice to have reassurance that I am not going crazy or a hypersensitive hypochondriac...that is truly my worst fear. From what I have read I am definitely getting cross-contamination because I just haven't been serious enough. It may be why I feel better but still bad if that makes sense. I am vowing to be more cautious and careful now and see if it improves.

Another thing I am curious about is if anyone has had a insatiable sugar craving when going gluten free. I have always had a sweet tooth but my goodness this is insane. I have been doing a little research and read that there is some correlation between yeast intolerance and sugar cravings?

Also, I have certainly increased my dairy consumption and I have read that food allergies can come in groups so besides stomach aches and such are there other symptoms that would show milk or dairy allergies. I just want to make sure I am doing everything I can to feel as good as possible.

Thanks for any info you can provide!

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I just went gluten free in November 2011...and I am having similar problems with my skin. It burns hurts most of the day. It easily turns red, even from just moving my forehead or mouth.... I have narrowed it down to my shampoos and moisturizers so I switched this weekend to Dr. Bronners Soap for Shampoo (gluten-free) and a gluten-free moisturizer (Burts Bees Daily Radiance) and i am noticing an improvement.

I have yet to check my makeup though. I don't really want to, but I might have to.

Most of my gluten reaction is now all in my skin it seems since going gluten free.

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Another thing I am curious about is if anyone has had a insatiable sugar craving when going gluten free. I have always had a sweet tooth but my goodness this is insane. I have been doing a little research and read that there is some correlation between yeast intolerance and sugar cravings?

Also, I have certainly increased my dairy consumption and I have read that food allergies can come in groups so besides stomach aches and such are there other symptoms that would show milk or dairy allergies. I just want to make sure I am doing everything I can to feel as good as possible.

Thanks for any info you can provide!

I want to caution you against thinking you have developed intolerances to everything else under the sun. :) Many of us get caught up in that thinking because we are not healing fast enough (so we think) and then, a bit of panic evolves. Been there/done that myself. :rolleyes:

You are STILL healing and if you are getting CCed, the antibodies are still raised and that is why you still have symptoms.

ALSO

you mention increasing your dairy consumption?

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

And yes, many of us report an increase in cravings for "goodies". A change in diet and carb intake (i.e. no wheat 24/7 like we were used to) can prompt this. Do not become alarmed that you have a yeast infection or sugar intolerance or fructose intolerance or something else just yet.

Be sure there are no CC issues FIRST. Try to relax and let your body heal.

If after 6 months or so, if you feel something else is an issue, ask your doctor. But, I imagine s/he will say what mine says : Give it time. As much as I hate that answer, it is usually all we can do. Heal--at our body's own pace.

Best wishes!

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Like others have said check for cc. Also sometimes it can take awhile to heal complete so get your iron checked again to make sure it still normal. I have had anemia for years then got diagnosed with celiac and they told me until my intestines heal I will probaly have problems so I might need another iron transfusion.

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One other thought--re:anemia.

Besides iron deficiency anemia, many celiacs have BOTH B-12 and FOLATE deficiencies which cause fatigue, aches and pains. Low energy and nausea, tingling, burning, etc.

Ask for your B-12, FOLATE and D levels to me checked. It was the folate level that no one checked that kept me feeling so bad--so I asked for the test and AHA! that's what it was!

Getting all those levels back up made a huge difference for me.

Just suggesting!! :)

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Thanks! My B12 and folate levels are definitely low and I have been doing monthly b12 shots and am supposed to take folic acid everyday but have been a total slacker in folic acid levels. Will do better!

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Anyone tried "the torch test"? This one was explained to me by my Gastroenterologist, to help work out what I am - and am not - sensitive to, because it can be so confusing to begin with, when you've first been diagnosed as a celiac. When you "do your business" each day, shine a torch on the water and it should be crystal clear, no cloudiness, and everything in there should be firm and soft! If there's any cloudiness or grease on the surface, then you're still eating something that's poison to your body. This worked for me: I changed my diet to absolutely ONLY fresh and unprocessed food (meat, fish, vegetables, fruit, nuts, seeds, brown rice - not white rice, they spray it with maize starch and some celiacs like me cannot tolerate the gluten in maize/corn - potatoes, fruit. But don't eat anything whatsoever that has a sauce or anything added to it and nothing that is fermented (like cheese, dried fruit, vinegar or alcohol). Do this until there is no cloudiness whatsoever - it took me about two weeks. Then introduce items one at a time and wait at least five days to see if there's any reaction.

I got really ill from a Starbucks salad and (after writing to them) found that they include Sodium Metabisulphite in it, to keep the potatoes from going brown. This stuff, which is used to kill off tree stumps, makes me VERY ILL. This stuff is used in coleslaw, potato salads, guacamole, dried coconut, wine (especially red wine), alcohol-making equipment and on and on. I thought it was only yeast that also made me ill, as well as gluten, but this stuff is a KILLER! BEWARE!!!

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I've never heard of that torch test. Sounds like it really helped you! I'll have to see whether I can get any hints that way because I think I'm still intolerant to something I'm eating.

As far as sugar, are you eating a bunch of starchy gluten-free substitute foods? They can have a really high glycemic index and send you on a blood sugar roller-coaster that will result in pretty fierce sugar cravings.

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one reason you can react strongly to something (containing gluten) you did not react to initially, is freshly activated T cells.

They are even devising a new celiac test based on this, where you have to be gluten free for one week only and then when you try gluten again, the body makes freshly activated T cells and only celiacs make those. This is just an ordinary blood test.

Yes, lots of people do not get well while still using shampoo or creams with wheat protein in them, and some do not get better if there is any gluten in the house. Baking with gluten may be a big no-no.

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This is all so interesting and has made me really take this seriously and work harder to get better. Even my GP said "well it isn't like a Peanut allergy where you will die if you eat one." this was in response to my question of how serious I needed to be about my diet and CC. Looking back, this statement shows how little she must know about the disease.

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This is all so interesting and has made me really take this seriously and work harder to get better. Even my GP said "well it isn't like a Peanut allergy where you will die if you eat one." this was in response to my question of how serious I needed to be about my diet and CC. Looking back, this statement shows how little she must know about the disease.

Well, yes and no. We all get into situations where we "oops" and eat gluten. The darned stuff is really hard to avoid. An "oops" with an anaphylactic peanut allergy sends you to the hospital if it doesn't kill you. For most celiacs an "oops" with gluten is uncomfortable but not dangerous.

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This is all so interesting and has made me really take this seriously and work harder to get better. Even my GP said "well it isn't like a Peanut allergy where you will die if you eat one." this was in response to my question of how serious I needed to be about my diet and CC. Looking back, this statement shows how little she must know about the disease.

This is alarmingly ignorant!! :o:angry:

She knows NOTHING about celiac disease if she made this irresponsible statement. You need to be serious about your diet, hon. Not paranoid, just careful.

It is true that you may not have an immediate anaphylactic response like in a peanut allergy, but if left untreated, it will continue the autoimmune response and possibly cause many complications as a result of malabsorption --like other autoimmune diseases and even cancer. There are people on here with MANY dire health problems as a result of unDXed/untreated celiac disease.

I may not die instantaneously from a small trace of gluten, but I could have died as a result of long UnDxedCeliac for as sick as I was--and any amount is like poison, as far as I am concerned.

Not adhering to the diet will not control the disease.

Time for you to read up on celiac disease yourself and time for you to either educate her or get yourself someone else to take care of you for follow-up care.

IMHO

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My friends who have anaphylactic reactions ask me if Celiac disease is the same thing. I say no, it's not an allergy, it's an auto-immune disease, and will cause a slow painful death if I continue to eat gluten. Which is true. Untreated Celiac disease leads to all sorts of other diseases, up to and including cancer. It's not a visible disease like anaphylaxis, and not as quick, but IMO, it's just as deadly.

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