OptimisticMom42

Although there are those who say a skin cream causes them a skin reaction, everybody I know personally who had DH has absolutely no reaction from touching flour or using anything with wheat in it. This includes me, my father, and a few other people.

richard

Hello Richard,

I always like reading your posts because you are very direct and informative. On this issue though I would like to add that IMO celiacs should not handle gluten containing flours. Just breathing the dust is enough to make many of us very ill. And the chances of cross contamination are just scary.

Thanks RA

Hmmm so not everybody has a short fifth finger?

This was covered by a couple posters last week. One of them fantastk? said her daughter's results were like your daughter's and her doctor recommended a gluten free diet.

Not much help but it's all I've got... RA

Hi JasonD2,

If you actually send it you are braver than I am. I've thought about sending at least an email out to my relatives but....... most of them are so stuck up ......... my uncle told my mom that she DID NOT have diabetes. None of us are allowed to be ill, we are just lazy, crazy, welfare cases, ect. regardless of the fact that we all went to college and have jobs.

So their health is their problem, not my frustration.

Let us know if you really send it and if anyone responds. It's kind of you to want to help them but IMO most people don't want to be helped if it includes something as tragic as giving up their favorite foods.

Take care

RA

My dr. didn't run any of the recognised tests. After being told I was allergic to wheat and barley, I removed them from my diet. I have never liked rye so it wasn't an issue but oatmeal was. So I went back to the dr. and described my reaction to oats. He diagnosed celiacs then.

He never even suggested that I have testing done. If gluten makes you sick you have celiacs. If not eating gluten makes your wife feel better ..........

Nobody needs gluten to live.

RA

You used the term wheat gluten twice. You'll have to do some reading. It's wheat, rye, oats, barley and any of the crazy names they go by like natural flavoring. It would be best if for awhile you only ate freshly cooked unseasoned meats (you have to replace all your seasonings), fresh veggies and fresh fruits. Once you are feeling better you can add more foods to your diet. Read, Read, Read...... we are here for you.

Hope this helps

RA

Just wanted to add that for us soy and dairy free celiacs the Helman's Canola Mayo is pretty OK.

Hey JasonD2,

I've been glutened a lot. The smallest amounts will get me. I react to Bob's Red Mill gluten free oats, dog food dust, the jelly that got doubled dipped by a bread eater, tomatoes carried in a used plastic grocery bag......... it's an on going learning experience. I agree with you that the occasional glutening is probably just going to be part of my life. I do everything I can to avoid it and when that fails I do this......

liquid dye free children's benedryl (for itchy skin)

drink a tonic (huge glass of hot water, cherry or lemon juice, pure maple syrup) with Miralax if needed (to flush system, cherry juice reduces inflamation, maple syrup has magnesium)

double my magnesium to 1000mg before bed (to prevent cramps and to increase motility)

take acidolpholus (for better digestion of anything sitting in my intestines)

The last couple of glutenings only lasted about three days.

Hope this helps,

RA

Thought you would all find this interesting. On NPR tonight I caught a short story about a writer for Wired, Evan Ratliff. He intentionally disappeared and offered $5000.00 to the first person to find him. He was found in a gluten free pizza place in New Orleans.

Open Original Shared Link

Anyone have any thoughts? I want to make sure we have the proper screening done this time. Would elevated gliadin antibodies without elevated tTG be enough evidence to go gluten free?

Copied from a post by Frantastk

Your results sound very similar to my daughter's results. She had a negative ttg blood test, but positive antigliadin IGA.

She says that the dr is recommending a gluten free diet, so for her the answer was yes.

Hello Fluffy Assassin,

You can buy test strips to find out if you are in ketosis. The current listing on amazon offers ......

4 boxes used or new for $22.05

Go for the new ones LOL

RA

Were you already gluten free previous to this diagnosis of IC? Could the IC be from sneaky gluten?

We have a family member who was diagnosed with IC and after reading the post written by Ravenwoodglass on the subject she went gluten free and all the IC stuff went away. She has tested it twice (chicken McNuggets and pizza) and yep it was just the gluten. She didn't have to worry about the acid stuff as long as she was really careful about gluten (she lives with me, eats what I cook).

RA

My first go-round with celiacs, I dropped to under 100lbs and a size 3 was to big, I'm 5'6". I was going through a divorce and working at a job I hated. The dr's decided I was depressed. I set some ground rules for the ex, changed jobs and got better for almost 10 yrs.

This time round, I suddenly became dairy and soy allergic when my eldest child was arrested and jailed for a stupid fuss over a really stupid girl. This wasn't an overnight at county, he's in the big house.

So, yes, in my case stress may have triggered my celiacs.

Being a control freak, I can understand how moving, against my wishes would stress me out.

Take care,

RA

I have a son who I suspect is just as celiac'ed as the rest of the family. He's 17yrs old now and has always had hypoglycemia. We recently tried him on L-glutamine. It comes in grape chewables. It's suppose to help stabilize sugar, build muscle and prevent the loss of what muscle you already have. He like it and commented that it seemed to help him work longer without feeling sore. A dose was 10 chewables so it would be easy to break this down into a kid size dose.

Hope this helps

RA

Celiacs does get worse......if you keep getting contaminated.....that's why I can't digest dairy.

You have to give yourself time to heal. I'm 6 months or so into this and still have problems digesting grains. Some days I feel great, then I eat corn or some gluten free snack and we are back to feeling like I've got a rock in front pocket of my hoodie. But no itching or other glutened problems.

Oh, have you started a probiotic? Everytime you have "d" you should use a probiotic for awhile to replace the bacteria you need to digest your food.

Hope this helps

RA

I think most of us had a good case of hind sight visible gluten sensitivity. I had migraines as a child. The dentist said I was brushing the enamel right off of my teeth! That's one kind of funny! I'd like to go back in time and yell, "What kid brushes to much? Maybe I never had any enamel!"

Will you do a gluten challenge regardless of the results of the testing?

I'm finding it very interesting that regardless of the laws in place we are not able to trust the labels. We have to rely on common sense and each other.

Hi Roda,

I don't know anything about the tests but I did wonder what your reason was for retesting? Why just your oldest and not all your children?

This whole thing has made me so paranoid I want everyone I know to be gluten free just incase..... but my kids think I'm going a little bit over board.

RA

Wings are pricey here also. You could use bite size peices of chicken breast pan fried in olive oil and spices. What kind of sauces did she suggest? I'm thinking bbq, salsa, ranch, honey mustard?

Hello, things that came to mind while reading your post.......

Many of us have a hard time digesting the gluten free snacks.

A lot of us intially got better only to relapse because of other food intolerances. I noticed her only protein was tuna. Tuna, even the packed in water ones contain soy oil. And many of the gluten free snacks do also.

If you stop giving her grains and sugars, she will eat fruits and veggies when she gets hungry. I know you are worried about her health and weight and no mom wants her baby to be hungry but it's kind of like taking the bottle away. It's for her own good.

Nut milks and butters would be a good way to get some protein and healthy carbs into her diet. We put the nut butters on apple slices, rice cakes, or just eat it on a spoon. My kids like chocolate almond milk but it does contain soy lecithin so we limit it to school lunch boxes only.

Almost three...... do you have pets in the house..... breathing dog food dust glutened me once and a three yr old would be right down there on level with my mid sized and large doggies.

Can't think of anything else, I know this is frustrating for you, I hope that we (on the forum) were able to help you find the problem.

Take Care, RA

It very easliy could be. You should know that the blood tests and scopes are rather unreliable. A negative test result does not mean that your child does not have celiacs. It means that evidence of celiacs wasn't found. Positive response to a gluten free diet IMHO is the only way to know for sure.

The diet can be very easy to follow if you stick to the basics, freshly cooked meats, fruits, vegetables, rice... minus any food allergies (has your child been tested for food allergies?).

At least three of my family members have celiacs. Only one was tested and his blood test was negative. But none of us can eat gluten containing foods without being really miserable. We have no problem maintaining a gluten free kitchen with great meals.

Last night was taco salads followed by peach cobbler (Bob's Red Mill gluten free oats), night before that we had chicken bites in Sweet Baby Rays BBQ sauce, rice and corn on the cob followed by spice cake (gluten free pantry).

Hope your child is feeling well soon,

RA

Little Miss Muffet

sat on her tuffet

eating her curds and whey!

Think cottage cheese..... If you're not dairy allergic or lactose intolerant it's fine. We have three celiacs in our house. Only one, me, who is dairy allergic.

The one that took me awhile was cellulose. If it says cellulose in the ingredients I do some research before buying it now.