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Celiac Mindwarp

Oh No, Meltdown

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Hi

I have been hanging in there, doing loads of research, trying to piece together how this whole damn thing works.

My blood test was negative, but was only a basic test, and I have been wheat free 9 years so no great surprise.

My biopsy is next week, but I dont hold out much hope for diagnosis, as I only lasted 3 weeks on a gluten challenge before I was headed for being bed ridden or off to ER.

With my history of vomiting, D, miscarriages, reflux, migraines, failure to heal injury, fog, anxiety, depression, exhaustion etc along with response to wheat free, I am now happy to self diagnose.

BUT today I have just lost it. I am a ridiculously positive person, but dont know where to start.

I have gone gluten-free, but can't handle gluten-free products like bread, cookies, pasta. I think it may be too much sugar and maybe corn.

I am trying to sort out gluten-free suppliments, toothpaste, cosmetics etc, but my national charity support organization doesn't recognize these as problematic for celiacs.

They have been supportive on many things and are great on food products, but seem to take very medical/conservative line on lots of things.

I used to research for my job, so I am used to sifting evidence but right now I am OVERWHELMED.

I keep crying and dont know if I want advice or just hugs. My standby comfort food turns out to have cornflour in.

Wahhhh.

Not self pity, just dont know how to move forward. Feels like my head is full.

Sorry.

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Hi

I have been hanging in there, doing loads of research, trying to piece together how this whole damn thing works.

My blood test was negative, but was only a basic test, and I have been wheat free 9 years so no great surprise.

My biopsy is next week, but I dont hold out much hope for diagnosis, as I only lasted 3 weeks on a gluten challenge before I was headed for being bed ridden or off to ER.

With my history of vomiting, D, miscarriages, reflux, migraines, failure to heal injury, fog, anxiety, depression, exhaustion etc along with response to wheat free, I am now happy to self diagnose.

BUT today I have just lost it. I am a ridiculously positive person, but dont know where to start.

I have gone gluten-free, but can't handle gluten-free products like bread, cookies, pasta. I think it may be too much sugar and maybe corn

I am trying to sort out gluten-free suppliments, toothpaste, cosmetics etc, but my national charity support organization doesn't recognize these as problematic for celiacs.

They have been supportive on many things and are great on food products, but seem to take very medical/conservative line on lots of things.

I used to research for my job, so I am used to sifting evidence but right now I am OVERWHELMED.

I keep crying and dont know if I want advice or just hugs. My standby comfort food turns out to have cornflour in.

Wahhhh.

Not self pity, just dont know how to move forward. Feels like my head is full.

Sorry.

It could be sugar, you are right to be cautious. I am finding I cannot tolerate a lot of sugar. I can't eat gluten free bread either and had wondered if it was the yeast? I have recently started taking dairy free probiotic, have you tried it?

With regard to your biopsy, if you have been wheat free for 9 years, unless they are looking for anything else other than coeliac disease, there would be no point putting yourself through it as your results will turn out negative. I know this at my cost after being wheat free for about 6 months I had a negative result and I was asked to include wheat in my diet for 6 weeks so they could get an accurate result and low and behold after doing so (even though it was making me very ill) my result came back positive.

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Hi Mindwarp,

I've also never been officially diagnosed for Celiac (blood-test negative, went on the gluten-free diet rather than wait for a biopsy). However, I've got pretty firm evidence that I do have the disease and not just an intolerance, and I can live without an official diagnosis because I don't even want to think of what a Gluten challenge would do to me.

That said, are you completely gluten-free or just wheat free? Either way, it could indeed be other things bothering you. A lot of us have trouble with some gluten-free processed products, for various reasons. You could have developped an intolerance to corn, which is common (though thankfully I'm still ok on that one, fingers crossed).

Also, you should probably still go ahead with the biopsy. They'll at least be able to see if anything else is wrong, and they might be able to see traces of damage from your attempted gluten challenge. I'm actually doing the same thing now, 3 years after going gluten-free, since other problems have popped up and it's damn well time I saw a proper GI.

Cosmetics and other products is tricky. Some people don't worry about gluten in things they don't eat, but most of us steer clear. For some it can cause dermatitis and skin problems. Most of us go on the principle that if you could get it in your mouth, don't use it. Look for natural/organic products. They are a bit more expensive, but will list all ingredients and companies are more aware of the need for gluten-free products. It's worth it.

So, hang in there. Stay away from the gluten, try cutting out corn to see if you feel better. And yes, we'll always be here for advice and support and big hugs.

*BIG HUGS!*

Peg

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okay, let's start with this ((HUG)). :)

Since you reintroduced the gluten in anticipation of the biopsy, it is likely this has caused major inflammation in your gut and your system.

No wonder you feel so bad, hon. Some doctors will DX based solely on your medical history and the drastic symptoms caused by the gluten challenge. Any chance you have one of these open-minded types?

The endoscopy/biopsy may not reveal villous atrophy, but it may well give the doctor some indication of what is going one.

I am one of the people who feels that any cosmetic type product that could potentially end up being swallowed (and I mean lipstick, sunscreen, or makeup that might run because of perspiration) should be scrutinized for wheat products. I am not concerned with mascara. As for shampoo, well, that is more likely to cause problems in people with a topical wheat allergy.

If you are worried about it, just use products that do not contain "hydrolyzed wheat protein" Toothpaste rarely has gluten in it (from all I have read) and I, personally, have not seen any with gluten in it.

What makes you think corn is a culprit and not just your gut being grouchy from the gluten challenge?? Very often, we may think we have other food intolerances when it may not be the case.(and some of us do! I can't do soy, for example, but that's no big loss for me and at the beginning , I could not do dairy at all---now, that was a big waaaaa!! for me :( )

let's see if we can help you sort this out.

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Here's some more hugs for you {{{hugs}}}}.. It can all be a bit overwhelming at first, so just bite it off one piece at a time instead of getting overloaded. :)

Make sure your food is gluten free first, and in doing this it is usually better to start out with whole foods rather than diving right into gluten free substitutes which contain large amounts of soy, corn, sugar, different grains and goodness knows what else. Cook from scratch and eat wholesome meats, fruits, veggies, nuts, seeds, rice. Purge your kitchen of gluten so you don't mistakenly use some (or feel tempted to). Food banks are always grateful for donations. :)

Next, get rid of cookware that is porous or cannot be cleaned, like wood and plastic utensils and cutting boards, get a new colander/strainer and new toaster and discard scratched nonstick stuff that will cross-contaminate your wholesome foods.

Now turn your attention to any scrips you have, any OTC meds you use and eliminate any with gluten. You can check on glutenfreedrugs.com, contact the company directly (the pharmacist should be able to tell you which one) or have the pharmacist do it.

Number three is cosmetics and toiletries. Read the labels with a magnifying glass.

Number four (but this should have come earlier) is don't eat out or eat food others have prepared even if they insist its gluten free, for the first month(s) until you get comfortable with the diet. This is too adventurous for someone just learning the ropes.

Number five is the refinements, like not kissing someone who has just eaten gluten, checking pet food and either replace with gluten free or be fanatic about handwashing (and eliminate doggy kisses too).

Once you have worked your way through this list you should be starting to feel confident and ready to tackle the grocery store labels. You can be sure of Udi's bread, Kinnickinick pasta, and that any product from Kraft will be clearly labelled gluten free if it is. You will have to work out for yourself from your reactions whether you can eat products made on the same lines or in the same facilities as gluten products -- some of us can, some can't.

There now, once you break it down into manageable chunks it really isn't that bad. Trying to do it all at once will leave you in a sobbing heap on the floor, so don't do it. And come back and ask for support and help whenever you need it - we are here. :)

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Thank you all SOOOO much for advice and hugs.

My endoscopy is Tuesday, so maybe I can get some help there. I called the hospital yesterday, the nurse was really nice and said the GI I am scheduled to see is very good and kind.

I think I may at least swing a nutritionist referal.

I am gluten-free now, but only 3 weeks, so early days. My gluten challenge was July so not much help now.

I am going to try REALLY hard to get a diagnosis on history and gluten-free response.

I think standing in a health food store and finding so little healthy for ME, and not being able to pick up the gluten-free suppliments I wanted just finished me off yesterday. I have a little more perspective today (thanks guys!)

I am a bit stumped on the corn - fresh has always seemed

Fine, but I tested with a pile of nachos which I checked were gluten-free and had monster reflux. I also get it with cornflakes and most gluten-free bread, cookies etc which is made with corn.

So:

Endoscopy

Whole foods

Supliments

Hugs

Is my new prescription I think.

Thanks again, I love it here x

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I am a bit stumped on the corn - fresh has always seemed

Fine, but I tested with a pile of nachos which I checked were gluten-free and had monster reflux. I also get it with cornflakes and most gluten-free bread, cookies etc which is made with corn.

This is just my opinion, but if you can eat plain corn without issues, then it is likely not a problem with corn.

A "pile of nachos" (yum) would give anyone a bit of heartburn and it could be from the salsa, the cheese, the peppers, or any other food protein in the mix. See what I mean? :)

Same thing with cornflakes and gluten free items--too many variables.

The only way I have been able to figure out a food intolerance is to isolate that food and just eat it plain and see what happens.

Take corn out for two weeks. Then, try some corn--just corn. Not corn as an ingredient in something and see if that helps. Just a suggestion.

Hang in there. I am guessing you are still inflamed from adding all that gluten back in and you are understandably, stressed out waiting for your testing and looking for some relief.

Good luck and keep us posted.

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Thank you all SOOOO much for advice and hugs.

My endoscopy is Tuesday, so maybe I can get some help there. I called the hospital yesterday, the nurse was really nice and said the GI I am scheduled to see is very good and kind.

I think I may at least swing a nutritionist referal.

I am gluten-free now, but only 3 weeks, so early days. My gluten challenge was July so not much help now.

I am going to try REALLY hard to get a diagnosis on history and gluten-free response.

I think standing in a health food store and finding so little healthy for ME, and not being able to pick up the gluten-free suppliments I wanted just finished me off yesterday. I have a little more perspective today (thanks guys!)

I am a bit stumped on the corn - fresh has always seemed

Fine, but I tested with a pile of nachos which I checked were gluten-free and had monster reflux. I also get it with cornflakes and most gluten-free bread, cookies etc which is made with corn.

So:

Endoscopy

Whole foods

Supliments

Hugs

Is my new prescription I think.

Thanks again, I love it here x

Did you check that the corn flakes are gluten-free? Regular ones are not.

Nachos give non-celiacs reflux. Not the best way to test if one item bothers you. Too many potential items like dairy, salsa, cc (sho made them?), etc

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I am falling about laughing about the nachos giving everyone reflux!!! And all the other stuff on top too...

Mr Mindwarp and I often say we can be pretty dumb for such smart people. Think I might have had one of those moments.

Fingers crossed I'll track it down. They were SO good...

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on top too...

Mr Mindwarp and I often say we can be pretty dumb for such smart people. Think I might have had one of those moments.

Now I am laughing --we only sound smart because we already did all this dumb stuff when we were newbies, too!! (shh, don't tell anyone....)

It's all new to you...and there is no "instruction manual", so we make mistakes a lot, unfortunately. I still get burned occasionally. <_<

You have been wheat free for years, but gluten free and cross-contamination free --is a whole 'nuther aspect. You'll catch on! Hang in there.

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I wont tell a soul, promise

;) you're adorable.

Having a sense of humor is a good weapon to have in your "defeating the celiac monster" arsenal.

Oh, you mention gluten-free supplements. What were you looking for that you could not find? Maybe we can help.

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