ShayFL

I did Kimball first and I came up NEG for the 2 genes they tested. I wanted more INFO so did the Enterolab too. I possess 2 gluten sensitivity genes, one of which is associated with neuro symptoms. I have manly neuro symptoms.

Sounds like a good plan. Eat lots of gluteny foods before your tests. Buy extra toilet paper and dont plan any activities that require consciousness.

I used Enterolab and Kimball for genetic. This explains it well:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

I have that kind about once a year. It is awful. It does go away with me after about a week of the exercises.

I do hope that if your biopsy comes back NEG that you will stop poisoning yourself. And I hope you make it. I am praying for you.

I couldnt do what you are doing.

Are you on a waiting list to get bumped up in case of a cancellation???????

Your Doc will likely need to order from Prometheus labs for your insurance to cover it. But there is also Kimball and Enterolab (which each test for the main Celiac genes, but Enterolab tests for gluten sensitivity related genes as well). There is a slight difference in how they test. See what your insurance will cover first and go with that.

And no me and ShayesMom are not in cahoots.....(no relation).

You can get the D-Mannose with cranberry extract in pill form. Or just pure D-Mannose in pill or powder. The powder might be best for a child as it is sweet and can be mixed with fruit or something. They wont mind.

I would get the one of these in this order. But do what you can afford:

Gluten Sensitivity Stool and Gene Panel Complete ($369)

Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test (Best Test Panel for Gluten Sensitivity). The combination of tests when ordered in this panel saves you greatly over ordering the tests individually. Top

Gluten Sensitivity Stool Panel Complete ($249)

Combination of stool test for gluten sensitivity, stool test for tissue transglutaminase, and test for intestinal malabsorption. These tests complement one another and are best ordered together. Save money by ordering them together. Top

Stool Test for Gluten Sensitivity ($99)

Test What It Tests For Meaning of Positive Result

Screening test for gluten sensitivity (Fecal antigliadin IgA antibody*) Reaction of the immune system to gluten in the diet Immune system considers gluten a foreign protein causing a reaction that may damage the intestine and other tissues of the body Top

I would sometimes add cinnamon to it to Laura.

I am always amazed how much people worry about what other people will thing/say. YOU are the only person you have. Love yourself and do what is best for YOU.

Tell them, "It has become medically necessary for me to no longer eat gluten. I stopped eating it and I feel better."

End of discussion.

I dont make anything difficult for ANYONE.

I am a MUCH better cook now and my family gets excited when I prepare new gluten-free meals. My daughter exclaimed "I hope you are ALWAYS gluten free!" gluten-free tastes good.

And when I go to a dinner party, I take a big dish of food I can eat and share. I just say. I can no longer eat gluten as it makes me have neurological symptoms such as migraines, vertigo and neuropathy. No one who really loves/likes me wants me to have those symptoms. And even new people/strangers understand.

If you live with/associate with or are bound by family ties to anyone who says that you are just trying to be difficult......you have some serious questions to ask yourself? Disassociate with those you can and request therapy with those you cant.

Life is too short.......

No I have not. If you try them....I wish you good luck!

I would pour cold milk over the hot rice....so it ended up a warm treat.

Once again...I will not go into my feelings about most doctors.

Your positive response to the diet is really ALL you need. But if you can afford it, do the Enterolab with Genetic testing. Go ahead and do the casein and soy while at it as most celiacs/gluten intolerant folks have issues with those as well.

You can also get full celiac panel through online labs like Directlabs.com. It is pricey. But you do not need a doctor's rx for them.

See I was told for over 10 years that there was NO WAY I could be hypothyroid because I was a. too thin and b. not constipated

Well I was VERY hypothyroid and my symptoms that are related to thyroid resolved when I reached a good level of Armour. 4 different doctors told me that I was not hypothyroid.

Now I cannot use the word I want to use.........#$%#!!

I just cant comment....I get in trouble when I say what I feel about most doctors.

And Sam....I hate to tell you this....but if you are gluten-free when you get tested, the tests will likely come back negative.....so you have to eat lots of gluten before the test for a good 3 months.......

I have a feeling because of your family history, you will want an official Dx.....and if that is the case...keep eating pizza and pie.....

If you dont give a rats behind about what anyone else thinks, stay off the gluten, declare yourself gluten sensitive, and enjoy your life!

It took me over 3 months to see real improvement.

"Yesterday, she called me and said that she is feeling hungry al the time and she is loosing weight."

This is what typically happens to Celiacs (me included). When you remove the poison and your body can start to digest again, it makes you HUNGRY to get the nutrition it has been lacking. Once the nutrients have a chance to start getting to the cells, healing will begin and she will start to feel better.

2 months is not long enough.

PLUS: Certain she is 100% gluten-free??? Did she replace all of her old scratched pans, toaster, cutting boards? Cleaned everything to remove any old wheat flour dust? Made sure her toothpaste, creams, lip care, cosmetics are all gluten-free? Making sure no one else in her home is cross contaminating things like butter and mayonaise?

Not to mention, most celiacs MUST cut out dairy for at least 2 - 3 months until they heal. For many they get the same symptoms from dairy as gluten in the early months. It is the tips of the villi that digest milk/dairy.

In general, I believe, processed foods are harder to digest. I would avoid them for now and reintroduce them later (if you really want that hollow nutrition).

Try this. Boil some regular rice and pour the rice milk over it and eat it. See if this causes any reaction.

I used to love to make white rice, milk and sugar and eat it......You could add a drop or 2 of Stevia or a tsp of honey to make it yummy.

Hi Meline,

I DO NOT believe in the words "incurable". MANY people on here have suffered with neuropathy and gotten better gluten-free (and/or eliminating other food intolerances and/or getting treated for Lyme/Candida, etc.). THEY GOT BETTER!!

So do not think you will always have this. I have it. And it waxes and wanes. Sometimes it goes completely away and then it comes back.

Nerves are funny things. First, they take a LONG TIME to heal. Estimates are 1 - 2 years gluten-free for complete resolution. AND when they are healing they do some crazy things. New sensations. Worse before better....not fun.....but road to recovery.

BELIEVE and keep doing what you are doing!!

I am now taking Benfotamine in addition to B12 and it is helping. A form of vitamin B-1.

Hang in there.

Susan....you NEVER grow out of it. That is a myth and old wives tale and causes A LOT of people years of health problems and even cancer later in life. I wish that myth would die..........

It is true that some are super sensitive, but MOST will be able to eat them. I think CC is an issue for the uber sensitive anytime they eat a processed product.

For them, only meats (grass feed and wash before cooking), eggs (free-range and not fed grains), whole fruits and veggies (that you clean and cut up yourself), milk/plain yogurt if you tolerate it and nuts in a shell (you crack yourself).

MOST do not have to be this extreme as MANY eat the new Rice Chex with no problems. Me....rice bothers me too....so I wouldnt eat them.

Sorry to hear this Jason. Are you being treated properly now?

I found these:

Open Original Shared Link

Rice Guy has some good ideas. It also wouldnt hurt to do a herbal parasite cleanse (which are generally more effective than Rx). People on this board like Humaworm, but I think Paragone by Lame Advertisement is equally as good.

Def. try gluten-free for awhile and cut out the other known offenders like Rice Guy mentioned.

And then work on "healing" her gut. Intestive or Seacure, PepZin GI, 8 - 10 mg Biotin daily and probiotics.

I had negative bloodwork, but a positive response to the diet.

The only TRUE proof is in the diet.

Doree, your doctor works for YOU!! You can hire/fire any doctor that is not doing their job. Doctors are just people with specialized training in a particular field (medicine). They are not gods.

Ask for ANYTHING you feel needs to be tested and if they say no or brush you off. Find another doctor.

If you can afford it, you can get your own testing through places like HealthCheckUSA and DirectLabs.

Never let a doctor control your health. YOU owe it to yourself to stand up for yourself.