ShayFL

That is great news!! But I must admit I got really excited when I saw "Grainless" and then was disappointed because they do use grains (rice). It is a bit of a deceptive name, though their cause is AWESOME!

Im in the last camp also. I have not had the FLU since I was a kid. I dont believe for one minute that our immune systems forget. True, you will get a different strain of influenza, but the body "remembers" what needs to be done. Vaccines arent natural and not only do they contain mercury and other chemicals, they also have constituents of "egg" which can cause "egg" intolerances in some people and start off an autoimmune reaction. They inject the virus into eggs and use that for the vaccine. It isnt how Mother Nature intended and I believe there will ALWAYS be consequences when you go against mother nature.

I do not dispute that vaccines have saved lives and made certain horrible childhood diseases a thing of the past. But I also believe it was a trade off for increased autoimmune diseases and neurological diseases.

For the FLU, I agree, that they should only be considered on a case by case basis. (no I didnt mean it that way at all).

And that is my 2 or 3 cents.

Get a copy of your Thyroid labwork and make sure they tested TSH (3rd generation), Free T4, Free T3 and BOTH antibodies. If they didnt test these you didnt get proper evaluation. And even if they did, many of us (including me) were told we were "normal" for years (me 12 years) when in fact I was very hypothyroid. Finally got a new doctor that used the new TSH range and got me on thyroid meds. It was like someone switched a light on in the dark.

Read here:

www.stopthethyroidmadness.com

Iron is one of the leading causes of overdose in children. They dont need very much. I highly recommend getting him tested. They can do a simple pin prick test or a blood draw.

Celiac and Hypothyroid can both lower the Ferritin dramatically. So can heavy periods, surgery and and bleeding ulcers.

But you'll have a hard time getting it up with those pills. They are HARD to digest.

You can ask your Doc. for intravenous if he wants to get it up fast.

Otherwise, you will be taking those pills for A LONG time and they are an irritant.

Google "iron supplements" and learn about them. The ones I have mentioned arent costly and are better absorbed. But do whatever you feel is right for your body.

Consider the SCD Specific Carbohydrate Diet as it is very healthy and supplies much needed fiber which your current diet is lacking. You get easy to absorb carbs that wont feed the bad bacteria in your gut plus it is naturally gluten-free.

www.pecanbread.com

This is a good place to learn about it. It talks a lot about Autism, but if you buy the book "Breaking the Vicious Cycle" you will learn the diet is for Celiac, Crohns and IBS too. It works...I know cuz Im on it!

THE ABOVE POST IS SPAM!!!

O.k. you are on one of the hardest to absorb and digest Iron tabs.

Floridix Iron (liquid) gluten-free formula or Solgar's Gentle Iron......no upset tummy and absorbs very well.

I though you had thyroid labs for me to look at. Cuz you mentioned being hypothyroid. Are your meds gluten-free? Did you check?

Are you Diabetic? GP is associated with Diabetes. And Diabetes is associated with Celiac. This is a common triad.

I think it is fine to "ready" yourself, get through Thanksgiving and then take those 2 weeks to get used to all of the effort the diet takes. There are no real rules with regard to timing. It is up to you how you want to proceed.

This is th model I use. So far I have been happy with it. And it makes "serving sizes".

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Cuisipro-Donvier-Ele...r/dp/B0000DE4TY

What thyroid med are you on? Did you call to find out if it is gluten-free? Armour and Synthroid are gluten-free. Generics might not be.

Post your labs. Let us look. Thyroid is my bag.

Welcome to the boards!! Many of us have been in your shoes.

I want to address the food/money issue. If you are accustomed to eating mostly processed foods, it will be a lot harder for you to adjust. However, eating gluten-free does not have to be more expensive than not. Im actually saving money because I dont eat out anymore.

Plain meats, eggs, veggies, fruit, rice, corn, beans are all economical. You just might have to learn how to cook more, freeze and budget your time. That is where we come in. We are happy to help. Let us know your regular foods, and we can suggest alternatives or gluten-free versions.

Most importantly I wish you well.

my question is, i guess, can i just assume that with the bloodwork, she has celiac disease and get her on the road to recovery rather than waiting for a scope and feeding her things that could be so harmful?

A mother's instincts probably have more value than a medical degree. Yes, you can decide to take your daughter's health into your own hands. BUT and this a big BUT, by bypassing the biopsy, you may not get an official diagnosis. And at some point when your daughter is perfectly healthy, some doctor will question the diagnosis because it was only bloodwork. Then he will order more bloodwork and it will come up NEG (of course cuz she is on a gluten-free diet) and declare that she does not have Celiac. You might think to yourself, maybe she doesnt and feed her gluten again. She doesnt react , so you are relieved and let her eat gluten at will. Then she gets T1 diabetes or lymphoma (both related to untreated Celiac) and they retest for Celiac. Low and behold she does have it afterall.

What I am getting at is that once you make that choice. She is Celiac based on her bloodwork, it is for LIFE. The diet is for LIFE. No second guesses.

Read the instructions, most test like that have a "window" of time from which you can read results. Any results out of that time frame are invalid.

I wouldnt rely on a home test alone. If you are truly Celiac and take that test and it says NEG, you could be doing yourself great harm by continuing to eat gluten.

Please go to a doctor, discuss your symptoms and get the appropriate blood work done.

Try either Floridix iron (liquid) they make a gluten-free bottle and it says it on the label or Solgar's Gentle iron. Both are very absorbable and easy on the body.

I would nix the dairy too for now so the tips of her villi can heal fast. She will feel better sooner.

Smoothies are a great idea and if she refuses make popsickles with them. I know it is cold now and popsickles might not be a big hit. But you wont have to waste the fruits this way. You can just lightly thaw and blend in the blender again. You can get hemp milk or almond milk to make the smoothies or if she tolerates soy, that as well.

Here is a nutritious smoothie that will help her fill out again:

Open Original Shared Link

Just dont "force" her to eat. Let it be on her terms. Make the creating of the food seem fun to her so she will want to try it. Instead of just putting the smoothie in front of her face. Let her throw some of the ingredients in the blender and maybe turn it on (on low speed so it doesnt scare her). Make fun sounds while make it and such. You drink some first and smile and carry on. Then if she seems interested, let her try it.

Kids naturally put things in their mouths at that age, so maybe design some fun crafts or art with gluten-free foods so she can associate food with feeling good again. And maybe she will want to nibble on the project. You nibble first, but dont say anything. Just have fun and hopefully she will follow your lead.

No test is 100%. How old is your daughter? Under 6 it would be VERY unlikely to be a false POS. Also, if you are going to have the endoscopy SHE MUST KEEP EATING GLUTEN!! DO NOT take her off of gluten. Feed her her normal diet until the biopsy is complete. You can go gluten-free right after the procedure.

By taking her off of gluten now, the intestines can heal enough for a NEG biopsy, they they might say she doesnt have Celiac. And her blood clearly indicates she does. If she continues to eat gluten with Celiac, you could be setting her up for T1 Diabetes, Hashimotos Disease, Graves Disease, Infertility, Lymphoma and other autoimmune diseases.

It is so vitally important to get all of the testing done before gluten-free diet.

Now if you keep her on gluten and the biopsy comes back NEG, ask for a Genetic test. If she has one or more of the Celiac genes with a POS blood, many good doctors would dx Celiac this way. And a gluten-free diet is the only cure.

Do either you or your wife have any health issues? Bloating, loose stools, excessive bathroom trips, lots of gas, headaches, migraines, skin issues, thinning hair, fatigue, etc?

I should be able to report back by Saturday night.

I suppose if you can tolerate eggs and eat the SCD yogurt, you could manage it. After the introductionary phases, certain beans can be added in. It would be doable, but a lot less variety.

You can get B12 at any healthfood store. I like Jarrow 5000 mcg sublinguals. You want to dissolve it under your tongue so it is absorbed directly into he bloodstream. It is non-toxic. You can take mega doses and whatever your body doesnt need gets removed into your urine.

Being a vegetarian, you will want some expert guidance. A health professional or buy a good book:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/s/ref=nb_ss_gw?url=s...p;x=14&y=26

I am on SCD, but you arent eating meat, so that would be tough.

If only we could refuse to pay for crappy service. So sorry this happened to you. I got crappy service from an ENT once. He is an "expert" and "world renouned" but he treated me poorly. I was paying out of pocket.....nearly 700.00. This was 12 years ago and I didnt have a job. So I wrote him an emotional letter telling him that he should be ashamed of the way he treated me. I pointed out examples of his horrible "bed side manner". I told him my husband (who was there with me) was absolutely appalled. I told him I chose him out of network because he was supposed to be the best. Telling him how much confidence I had in him and that he was no better than a nurse practioner. To my great surprise, I got a letter in the mail back and they gave me a complete refund. I confirmed that my credit card had been credited. Complain. You never know.....

Do you share their pots and pans? Their wooden spoons? Their cutting boards?

Is any form of wheat flour EVER used in the kitchen? That fine powder gets everywhere and you cannot clean it up. It can settle on dishes, dish towels, cups, strainers for dishes, countertops....it is an ultra fine powder and you can even breath it through your nose or mouth and some can make it's way into your esophagus and be swallowed. Flour is the devil for Celiacs.

Do any of the gluten eaters share your peanut butter, butter, spreads, etc? Where they might be making a sandwich with your peanut butter and double dip the knife leaving bread crumbs in your peanut butter? This is just one example, there are other ways this can happen in a shared kitchen.

Kimis be gentle with your body. It got hurt real bad and you trained it to eat only one meal a day. So be patient with it while it heals and you will have to retrain it to eat at other times. Start simply by eating a small piece of fruit for breakfast for instance. Keep your evening meal as usual. Once this sits fine, try adding a little snack at lunch time. Gradually increase your food consumption at these times until you are eating normally again. Our bodies are amazing and wonderful and they can relearn. This may sound silly, but talk to your body. Tell it you love it and that you are taking care of it. Eat in a relaxed manner. Eat foods you enjoy (gluten-free of course). I wouldnt call it a disorder, rather a coping mechanism.

Do you frequently kiss a gluten eater who has not brushed their teeth before kissing you? Do you work with art materials/craft products that might contain gluten? Did y6ou replace old scratched Teflon pans, toasters, cutting boards and wooden spoons in your kitchen? Do you use a "mixed" kitchen where someone else uses flour products? Do you work somewhere where they bake gluten or cook gluten items?

If you have eliminated ANY possibility of CC.....then Im just thinking out loud here, but what I wonder about Refractory Celiac is if something else in the human diet doesnt mimic gliadin and therefore cause the autoimmune reaction, the antibodies and the subsequent intestinal damage.

Do you still have the symptoms?

I think if it were me, I would try a "grain free" diet for 3 months and see a. how I feel and b. retest blood to see if the antibodies are going down. My reasoning would be that if anything can mimic "gluten/gliadin" then it would be in another grain.

It is just a thought........