mslee

Hello

Have been wondering I have seen ingredients list "corn gluten" or "rice gluten"

also thought I read somewhere if you cook rice down too much and it gets gooey it forms something similar to gluten.

How does that apply to Celiacs?

I have pretty much decided SCD is for me but for those who still consume grains and starches...ooo what about potatoes when they get super gummy???

Just curious,

Thanks!

I'd look into getting a reverse osmosis water filter; my allergist said it is the best option and is very important for treatment.

I think you are going to need to go grain free. Keep in mind that if you are not able to absorb, you'll lose weight anyway.

www.pecanbread.com is SCD and a lot of ideas for dairy free because many of the autistic kids can't handle dairy. I lost weight initially on SCD but then have been holding steady now for several weeks. My guess is it is helping me start absorbing better. On SCD you eat more nuts which are very nutritious.

Got my Allergy test back I tested positive allergic to:

-milk

-corn

-rice

-soy

-pecans

-cashews

-other nuts were ok

a few others but those seem to be the worse

So good call!

I will talk to my GI tomorrow about SCD.

And probably now that I have somethings narrowed down see a dietitian! Yay!

Rachel ~ I think you posted something about chronic poisoning of heavy metals and Liver Dis-function. My liver is showing odd lab results, I find out more about what is going on tomorrow.

Will have to see an alternative Dr for further chemical testing but for now, I know I am sensitive so will just continue to be careful. & try and pinpoint anything I could be regularly consuming with toxic ingredients.

Could plastic contamination in bottled water be an issue I wonder???

Christine ~ what is that list from? Will look into, tyramine thanks!

I eliminated most all of those foods while taking out soy,dairy, MSG/Processed foods...def feeling better since!!!

Paula ~ are you on a processed food free diet? Have you had allergy testing done? I see you are waiting for your intolerance tests back, hope they provide some answers! If not try above mentioned taking out MSG was a huge help for me! Hope you feel better!!!

Everyone else...HELLO!

Thanks for the input, very helpful!

I know there is a difference between Allergies and Intolerances, but my Doctor seemed to say these new allergies should go away as my leaky gut heals. Does that make sense?

Based on a Scale of 0-5

Scale 3's

Rice

Soy

apricot

onion

cabbage

coconut

celery

salmon

green olive

cucumber

Scale 2's

pork

milk

corn

peach

mustard

nutmeg

ginger

It was just the prick tests, he said they can show false positives but most of these I had already suspected made me feel sick.

Some like the pork, celery, olive I had been eating quite a bit more than typical the past week.

He also said quantity was important to consider, a little of these things may not bother me but in large amounts will make me feel sick.

The:

Bobs Red Mill

Pam's

and Tahini I brought in all tested neg. But I know Pams and Bobs bother me.

Looks like it's the SCD for me!

nothing too interesting to report...other than that I have developed a few low grade food allergies.

(he did not test the lotions this time)

It is very common for new dx celiac to come down with new food intolerances and allergies. My Doctors are telling me most should be temporary but we are looking at like 6 months to a year.

He said even though most of my skincare is natural/vegetable based there are still fragrances that I am sensitive to.

I have seen a dermatologist, he gave me some samples of Cetaphil, neutragena, cerave lotions just the basics...no color, fragrance anything...will have to double check the ingredients for wheat/soy.

my natural stuff all had soy, wheat, barley, perfumes so I am done with those and probably going with the CeraVe

Open Original Shared Link ...still waiting to hear back about the ingredient list.

Good Luck! It's not easy but we will learn!

Yes he started with food allergies 75 tested

slight allergic responses to

soy, rice, corn, milk,coconut there were others but those were the worse

he said he could do patch testing, but again he is an old fashioned doc and didn't place much importance on it (the $ holds me back for now)

best bet is probably to avoid as much chemicals as possible.

he did say having any sort of allergy issues automatically makes you more sensitive to dyes, perfumes, chemical smells.

Thanks for the input, now I know about the arsenic hair test and can bring these issues up whenever I get into an alternative type Dr.

Thanks Again!!!

Yes expecting a good year of healing time, moving into month 4

-less migraine headaches

-overall more relaxed, less stressed/agro

-digestive issues def. clearing up

-Joints are a little more achy, could be because consuming enough food has been a problem

-some new allergies have developed but I have Dr to help with that and should get better as I heal

there are always good days and bad days...and the risk for life of getting "poisoned"

(not really but thats what I call it because it makes me feel so cruddy!)

But don't the good days feel great!!!

amazing!

Thanks!

I'm glad that the gluten-free diet is making such a difference for you. That's the kind of story that gives me some hope for myself!

My doctor did mention microscopic colitis as one of the things she'd be looking for during the procedures. I'm planning to go ahead and get them done....whatever the outcome. Also, good luck with your biopsy results! My liver damage from AIH is at stage 2, which is still reversible.

Take care,

rissa

Thanks!

One thing to keep in mind this trial and error period can be very tricky, I will feel sooo good for a couple days and then eat something with some mystery ingredient in it that makes me sick for a day or 2. Keeping a diet diary is very helpful. I saw an allergist Tues and have testing tomorrow, probably wont find anything because these are probably intolerances rather than allergies but I figured it was worth a try.

Eating very simple foods is your best bet...I have always been an adventurous eater so I am having a hard time sticking to bland and boring.... But would not touch gluten with a 10 ft pole!!!

My GI said it was odd I had both microscopic colitis and ulcerative colitis, my liver has "minimal" inflammation so I hope it will heal being off gluten. Find out Fri. with my follow up apt.

This info about prednisone is very interesting! the stuff still scares me!

Good Luck!!!

Hang in there!!!

oh that was just the preliminary let me take your cash and talk about it apt.

testing tomorrow am, will go from there

Hi

I had never noticed strange reactions to lotions, but recently since being gluten free about 4 months all kinds of things are bothering me. In the process of pin pointing.

The other day I used the same lotion I always use and started getting dizzier and dizzier until it clicked omg it was the lotion, got in the shower washed it off and started to feel better.

I'm thinking since soy is as bad a gluten for me that the soy derived vit. E tocopherol could be the issue, but I'm kinda just guessing at this point.

I saw an allergist and have allergy testing tomorrow, the doc told me to bring in my lotions...will let you know if they find anything. He said it could be any # of ingredients.

The olive oil bothering you is strange

this condition can seem so bizarre! It's alot of work figuring it out! And yes I think our Immune systems are all out of whack at this point, until we can heal.

Good Luck!!!!

Thank You Guys!

Will be keeping a record of what bothers me...

I am going into the Allergist tomorrow, will post how it goes

Shellfish are not healthy to eat. They have contaminants like mercury, chemicals, pesticides, bacteria, viruses parasites, etc... google it. They are designed to clean the waters of the above mentioned list.

Same like pigs and rats clean the earth. Pigs eat all that contaminated food and what not.

My dh and mil get sick when they eat oysters. Our waters are more contaminated today than ever before and now there are pharmaceuticals washed into the waters causing lots of havoc in marine animals.

Salt water and fresh are polluted, the "fish" can't keep up anymore. I would only eat fish like salmon from Alaska or Iceland to be safe. Farm raised fish are bad too. Sorry for this explanation. Could be why so many get sick and are allergic to shellfish or what they eat???

Open Original Shared Link

Open Original Shared Link

Thanks!

I know everything is gross now a days!

They were kinda a treat, something I used to eat back home but I'm probably just too sensitive to be eating risky seafood right now. Probably best to save indulging for vacation to Alaska or the Pacific North West. And don't have much desire to eat more now anyways!

I try to stick to small/ eco friendly fish who live in cold waters for omega 3 fatty acids & a quick snack.

allergy testing tomorrow.

thanks for the links!

I'm new here; I have lots of autoimmune diseases, including autoimmune hepatitis. I'm taking azathioprine and prednisone for the AIH. I have gastrointestinal problems (diarrhea mostly) and have been losing weight for the last 6 months.

My doctor recently tested me for celiac disease including DNA typing. All of the blood tests were negative except that I do have a celiac gene (DQ8). Now she wants to do a biopsy, but I don't know if it's worth it.

Has anyone here been tested for celiac disease while taking drugs to suppress the immune system? Has anyone had an intestinal biopsy done while taking meds like prednisone? Do prednisone or azathioprine cause false negatives in tests for celiac disease?

rissa

Hey There,

Welcome!

I am fairly new here too, I got an definite dx of Celiac in July...See below I have other immune issues too.

I am not sure about the effects of the meds your on, on the celiac test but I can tell you the results from going gluten free are AMAZING... I feel more human than I have my whole life, more energy, strength, and mind clarity. I am so happy for the Dx! If they had not found it things could have gotten really bad, my condition was headed downhill fast.

Besides the celiac the colonoscopy/endoscopy found colitis. I would suggest having it done, it's not much fun but catching something serious early is worth it.

I was raised in Southern California, and am waiting up a follow apt for a liver biopsy for suspected autoimmune hepatitis. If you ever have any questions or want to talk feel free to message me.

Hang in there! ... this diet may be very beneficial for you!

~A.Lee

than you! thank you! thank you!

for all the info and support!!!

Good Luck with all your health stuff!!!

Gotta Run for now, the Hubby and I are trying to have a medical worry free weekend

will be back later.

Good Luck guys I hope you are feeling better this weekend!

RE:

"I found out its from CORN. I never thought about corn...but its in everything.

Something you may not have considered is that corn traces are even found in most meats b/c they feed cattle & poultry nearly 100% corn.

Please see the documentary "King Corn". It shows how most people have high concentrations of corn based markers in blood tests. Higher than any other signal. You will most likely need to avoid grain feed meats etc (b/c grain fed means "corn") and the other sources suggested in this movie."

Thats a good point too,

I try to buy organic as much as possible... (going into debt doing it, but feeling better)

Would get cheap meat here and there then after buying some "regular" chicken at Randalls I get it home and is soaked in sodium phosphate/nitrate or something like that...then doing some research they put MSG in everything, Soy in everything,...even spray it on our meat. I've been sold expired meat at HEB a couple times.

I'm not gonna even go into what they have started putting in lunch meat.

I just can't do it anymore, it makes me sick. Organic good, grass fed better.

sad but true, how toxic our world has become

I'd look into getting a reverse osmosis water filter; my allergist said it is the best option and is very important for treatment.

I think you are going to need to go grain free. Keep in mind that if you are not able to absorb, you'll lose weight anyway.

www.pecanbread.com is SCD and a lot of ideas for dairy free because many of the autistic kids can't handle dairy. I lost weight initially on SCD but then have been holding steady now for several weeks. My guess is it is helping me start absorbing better. On SCD you eat more nuts which are very nutritious.

I had been drinking distilled water because it is supposed to help leach toxins out of your liver, I can get reverse osmosis at whole foods so will give that a try too....Just want clean water!!!

Once we settle down and buy a place a water purifier will be a must.

Had not considered that Grains could do further damage to my digestive track. That is a good point. I will finish up what little I have and cut them out from there. All the foods on the scd/gaps diets sound really good and nourishing.

I picked up some split soup bones will be making good broth this weekend.

Thanks for the link!

Also no I have not been tested for Heavy Metal Toxicity, could be a possibility I know I'm sensitive.

Looked into chemicals sensitivities and mcs. So these are good things to bring up with my allergist....although he does look about as old fashioned as they get.

Looking into more alternative doctors covered by my insurance, but may be out of luck there.

The most important thing sounds like avoiding as much funky chemicals as possible.

Thanks for the info I was so overwhelmed! There is just some much to learn about!

I sent them an email!

Some good suggestions here! Thanks for the ideas, I like the tahini idea thats some good stuff! Makes a good dressing base too. I have been using olive oil as a butter replacement, good but spendy and not so good on sweets.

yes, it was a Mimi's muffin I had just been Dx and did not realize how serious this is, also did not realize Mimi's has a gluten free menu (it contains no muffins )

...yes never doing that again. EVER.

DH, on this celiac board, can mean Dermatitis Herpetiformis, a skin manifestation of Celiac.

Other "D_" usually refers to 'dear'

DD dear daughter

DS dear son

DW dear wife

DH dear husband

Ok those would have been my guesses,

that is a sweet way to refer to our loved ones! had not heard that before.

also the dreaded "D" LOL

Thanks!

Ditto for me, welcome to this thread mslee!.

oh hello just saw your reply, Thank You for the info!

I will follow up doing those searches on chemical sensitivities and MCS

thanks!

Hi Carla! I read about your mattress that is HORRIBLE! Hopefully you will start to feel better with it gone!

welcome mslee,

Have you ever looked into mold? What exactly are the symptoms you are still having? Have you looked into being sensitive to sulfites. maybe having an candida problem.

I found out i had arsenic toxic, possible mercury toxic threw an hair test.

paula

I think mold could be an issue, do Allergists test for that?

Yeasts have always been a problem, I would do SCD but can't do dairy, did find the GAPS diet (scd w/out casein) they sound good but I really need to gain weight now, at least stop loosing it.

I can tell rice and corn (the only grains in my diet) make me feel kinda light headed and I just want to keep eating more and more, but that makes me dizzier and dizzier.

Mostly the past 2 weeks I feel nauseous and have no appetite, drained, dragging, achy...and yes grumpy.

Maybe it's just too early to narrow everything down.

I do know soy feels as bad as gluten.

*Last week Rice Check without rice (or any form of milk) made me feel really dizzy, and then nauseous, and then headachy. It could have been soy based tocopheryls, or the BHT. I read on here chapsticks often have tocopheryls in the form of Vit E so I stopped using those last week.

* Last night it was something in the mussels I made, the mussels themselves or the wine I put in them & enjoyed a glass or 2 of

I think the wine said it has natural occurring sulfates. I don't drink much of it usually leads to headaches.

*can't wear metal ear rings, they get itchy and raw

*tap water makes me feel really sick, bloated, crampy

*stopped consuming MSG hoping it would help reduce headaches, it seems to be.

*any kind of poison, smog, or chemical smell makes me feel really sick

Guess thats a start.

I doubt a traditional allergist will cover much of this but it's worth a try, maybe I will show a definite reaction to something.

thanks!

good-night!

Hi

I'm sure this is a silly question but I haven't been able to figure out what DH or D_ means could be a number of things. I wont embarrass myself further by posting my guesses, maybe someone can clarify.

Thank You!!!

Hi

I realize I'm kinda butting in here, sorry

Started reading this thread because I am trying to pin point what else in my diet is making me sick...it's sooo long though.

I have an allergist apt next week, they said the Dr is familiar with Celiac.

Any tips on what exactly I should tell him?

Also I see many of you have chemical/metal sensitivities I know I do, how have you gone about pin pointing exactly what the problem is?

I replaced all chemical cleaners long before my Celiac Dx because they always bothered me. Junk food processed foods have always bothered me. I'm scared to find out what is in my meds.

they have me on

25 mg amitriptyline before bed for sleep & pain

4000 mg a day sulfasalazine for colitis

they told me to take motrin for pain, but with the colitis and tummy problems I stopped taking it

I've held back on my supplements because there is something making me sick and I don't know what it is.

any input is appreciated!!!

thanks!

For those of you with Chemical Sensitivities how did you narrow it down to a specific chemical or additive? Is There some sort of testing for this or is it learned through trial and error???

Thanks!!!

You may have developed an allergy to shellfish. A good friend of mine never had a problem and suddenly, ate lobster and had a similar experience to you. She can no longer eat shellfish.

It's good that you're going to see an allergist- I saw one about a year after I had gone gluten-free to rule out any allergies. Mine tested me for 40 allergies- all the major food allergens, environmental allergens. Of course, I was allergic to nothing (but intolerant to tons of stuff)!!!!!!! Go figure.

Hope you get some answers!

oh really tested positive for nothing!

That's what I figure will happen to me. But those last two food scares leave me needing some answers, it's too hard keeping nourished when everything makes you sick. I need to see a dietitian but feel I should know what foods I definitely cannot eat first.

Interesting about the shellfish allergy. My Mom and Sister have a ton of allergies, I was always the lucky one who didn't. haha jokes on me!

Thanks for the info!!!

Thanks Shay!

I got some good food down and am feeling a little better.

I noticed some people said sulfates can be a problem, I barely ever drink wine because it usually makes me feel headachey after a few sips. I wonder if the natural sulfates in the wine could have caused problems.

LOL Though I'm in no hurry to consume mussels any time soon.