ShayFL

I think this is what he was talking about:

What is refractory celiac disease?

Refractory celiac disease is a rare condition in which the symptoms of celiac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet. Before making a diagnosis of refractory celiac disease it is important to exclude complications of celiac disease and other co-existing conditions that can produce similar symptoms. It is believed by many knowledgeable physicians that refractory celiac disease is a malignant condition, that is, it is a cancer.

What is the treatment for refractory celiac disease?

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as prednisone have been used successfully in treating some patients with refractory celiac disease. Immuno-suppressive drugs (medications that suppress a person's immune system) such as azathioprine and cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory celiac disease are malnourished and have weakened immune systems, and corticosteroids and immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating celiac disease should monitor treatment of refractory celiac disease.

Unfortunately in some patients with refractory celiac disease, malabsorption and malnutrition progress despite drugs. In these patients the intravenous route is the only way to deliver nutrition. Total parenteral nutrition (TPN) is a way of delivering calories, carbohydrates, amino acids, and fat in liquid solutions via a catheter that has been inserted and secured into a vein.

If at some point the swelling seems constant, consider thyroid. Hypothyroid states will cause the tongue to swell. Just another thought.

My cholesterol was high once. But once I optimized my thyorid meds it has been normal ever since. High cholesterol does not equal heart disease. I have ZERO heart disease in my family history on either side. So when I got one high reading I didnt even think about it. My last labs said my risk is at the very lowest end. My C-reactive protein is perfect.

I get my flours from here and they have some ready made goodies:

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Here is another place:

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I had dandruff for about 5 years that nothing touched. It was worst around my hairline right at the front of my head by my face. I was often horrified when I would get all dressed up and then see the flakes. So I would try to get them out only making more appear. Ugh!!

I tried ALL of the different shampoos. Nada.

When I finally got my thyroid meds up to an optimal dose it went COMPLETELY away. Gone. I just scratched my scalp like crazy and nothing there. No gunk under my fingernails and no flakes.

It was unexpected. I would have never tied low thyroid to dandruff. But it worked like magic!!

Optimal thyroid also changed a weirdo kinky patch of hair I had for years. My hairdresser didnt know what to do with it. Kinky like pubic hair in about a 2 inch radius in only one spot. It went away like magic too!!

It could be another intolerance, or it could be that you are not optimized on your thyroid meds. Most doctors just get you into the "normal" range and they are done with you. They wont give you more no matter how much you beg and plead.

I have an excellent doctor that Rx by symptoms and not labs. My TSH was .008 in July and my Doctor is just fine with it because she tested my reflexes, body temperature, heart rate and blood pressure and all were perfect. No signs of hyper at all. My T3 is the last upper number for "normal".

There is an Ayurvedic herb called: Gymnema Sylvestre (Gurmar, Meshasringi, Cherukurinja)

In India it is known as the "sugar destroyer". It gets rid of your desire for sweets and if you eat them, they just dont taste good to you anymore. It will lower your blood sugar a bit, so monitor that if you decide to try it.

It has a long track record for safety. Google it.

I have researched it extensively myself and am almost ready to try it. It has a unique chemical that actually helps the Beta cells in the pancreas regenerate. I do have anitibodies to insulin and the GAD (just not enough to be dx with Type 1). So this interests me greatly. Would be nice to stop it in it's tracks and not progress.

Im not feelin bad. Just curious about this.

I did try to "add" back a few things and I paid. But I'm over it now. You wont hear me complain often. I just deal!

But today I feel pretty darn good.

Interesting about cranberries....I've just never liked them.

I've known about SOY for about 13 years. Everytime over the years I tried to add it back....it let me know NOT!!!

Peanuts and Corn have been on my avoid list for many many years also. I tried to re-introduce corn just recently and it didnt seem to bother me too much, but what I found was that I "craved" it non-stop. Like would wake up in the morning and think of what corny thing I could eat for breakfast, snack, lunch, dinner. And I would gorge on it.......Can you say ADDICTIVE? So I nixed the corn FOR GOOD!!

Legumes I think I can eat once in a blue moon and not suffer. But I dont really miss the beans all that much.

I have discovered some other "starchy" foods that I tolerate well if I just want some....like "Malanga". Like potatoes but not a nightshade. And sweet potatoes.

Perfect Tiffany!!

We have used most of these with our dogs and all has been harmonious in our home. We have 2 great danes and a standard poodle. You DO NOT want chaos with dogs this size!!

Lucy (poodle) is the only one who uses the "crate" in our home and it is a lifesaver. Otherwise she would bark all night in the back yard (we have a doggie door to the back). The big dogs share a "doggie room" with Lucy in her crate at night. The "doggie room" is their crate.....

Congrats on the pup!!!

I checked my bookshelves and I couldnt find it. It was a very thin book (less than 1/2 inch) and was red and said in white "food allergies" on the front. I got it at the health food store. But this might help :

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Sorry to hear about your friend. But most recover from GB and he is young and healthy and should do well.

One of my DH colleagues lost her husband last night. 46. Yes....it can always be MUCH WORSE than not being able to grab a slice of pizza from Pizza Hut!!!!

The scary thing is that if your thyroid hormone gets too low....you could die.

Google: Myxedema Coma

This isnt something to play with or ignore or hope it gets better. A small number of people recover their thyroid function after gluten-free, but many dont. Me included.

Armour thyroid saved my life!! I was like you....suicidal. It was miserable and I didnt want to live.

You MUST get help for this. PLEASE go to the ER if you have to. And BTW...iodine makes Hashi's worse.

I agree with everyone. You should see a PCP.

But, with regard to directlabs. I have been using them for over 3 years. They do not list EVERY test they offer. You have to call for some. And now it doenst mean that the ones not listed are expensive. They just dont have a complete listing online.

I had a complete Celiac panel through them which included TOTAL IgA. Call them.

Have every single 200 people been tested with blood/biopsy/genetic tests?

I am one who believes there are plenty of Celiacs out there WITHOUT the 2 U.S. recognized Celiac genes. And I also believe that "gluten intolerance" can be the early signs of Celiac with or without the 2 U.S. recognized genes.

Your Mom may not have Celiac based on U.S. criteria, but she sure might be "gluten intolerant". Has anything totally cleared up her IBS? Has she tried a gluten-free diet?

Over time I have been forced to give up ALL and I mean EVERY single comfort food I ever loved. I am too sensitive to most carbohydrates now (spike my blood sugar) and make me bloated. Diabetes runs in the family and I cannot afford to eat my old favorites.

So I stick to simple, unprocessed whole foods (grain free). No sugar, etc.

When I am sick, I make myself a big pot of soup. It is warm and soothing. I use gluten-free chicken broth as a base, add onions, garlic, chicken, fresh ground ginger and sea salt. You could throw in a handful of gluten-free pasta if you want some comforty carbs.

I mostly shop at my local super market: meats, veggies, fruits, plain raw nuts & seeds, squashes, sweet potatoes.....these are ALL NATURALLY gluten-free.

Eggs, Plain rice, most corn meal, corn tortillas, milk/plain yogurt (if you tolerate it) etc. are also naturally gluten-free.

I forgo the processed junk. It just spikes my BS and is empty calories that cause weight gain and bloating.

I dont have any "true" allergies either except a very low reaction to dust mites. Who doesnt?.....LOL

I tried a low salicylic acid diet once. The book claimed that if you didnt respond to this strict elimination diet, that food wasnt your problem. I didnt feel any different on it.

I have done ELISA off and on over the years and finally decided they were worthless.

Im always curious about others......

Chiquita banana......LOL

Anyone with DQ1 and DQ3???

I had good success when I had a bout of GERD with "CeaseFire" by Vitamin Research Labs.

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At first the the taste was kind of strong to me. But I grew to like it even. But it really did get rid of the reflux for me.

You have a legal right to your lab work. He cannot keep that from you.

My thryoid levels affect my hair texture. Low thyroid equals kinky course patches.

Before you decide your thyroid is "fine" read here:

www.stopthethyroidmadness.com

Get a copy of your Thyroid labs. If they didnt test TSH, FREE T-4, FREE T-3 and both antibodies, you didnt get adequate thyroid tests.

I was told I was "fine" for 12 years when I was very hypothyroid. When I finally got the proper treatment, the world became new again.

I discovered my gluten intolerance at the same exact time we were having our kitchen remodeled. It was completely gutted...even new drywall. Nothing left but an empty room. So I decided that the new kitchen would NEVER know gluten.

I feel there should be at least one safe place in this world for us and it should be our own homes.

DH and DD can eat gluten outside on the porch if they want. All gluten stays in the fridge in the garage. I dont go in there EVER.....LOL I also never eat at the table on the porch.

It has worked well.

Actually my 12 y.o. daughter has bee so amazing with this. She realized one of our herbal teas had "barley malt" in it. So she took it out to the garage. I had not drank any. It was her tea. She went to make a cup and realized it had gluten. She is so careful for me.

Collies are "working" dogs and need "work" to feel satisfied. They will "herd" children if they do not have animals to herd. They need A LOT of exercise and grooming.

As for the pound. Dont shop adopt is my motto. But for bringing a dog into a home with children, I cannot recommend RESCUE enough!! They screen the dogs very carefully and have them in various environments (children, cats, other dogs, etc.). They know where the dog will be best suited. With a pound dog it is a crap shoot. Yes, plenty of folks get wonderful dogs from the pound. My Mom did once. But my BIL got a dog from the pound for his kids (a lab) and it was a biter. It bit his 5 year old girl in the face. Seems this dog didnt like children getting in his face. With a RESCUE dog this isnt likely to ever happen. The dogs are fostered with children first. They wont place a dog in a home with children unless the dog has been tested with kids. It is a good way to get a dog.

We RESCUE exclusively. It is great. It allows us to learn of any possible defects in the dog. Rescues will disclose things like hip displasia, etc. We can learn if they are "dominant", "submissive" or "middle of the road". A dominant dog will snatch food from children and can accidentally bite them. A dominant dog will challenge adults who do not use dominance techniques properly. A dominant dog will "fight" with other dogs. An overly "submissive" dog will often "pee" all over everything and is easily "hurt". You can never yell at them. They will just "pee". Training an overly "submissive" dog is tricky.

We like "middle of the road". And RESCUE allows us this. They wont place a "dominant" dog into a home that doesnt want that kind of head strong energy.

Bringing a dog into your home is a MAJOR deal and should not be taken likely. We rescue and work with 1 Florida rescue group. I also participate in annual charity auctions for other rescue groups in the U.S.

So many get the dog because it is "cute" and then they end up in rescue because the are: too big, too dominant, hurt the baby, too active, etc.

Those were done 6 - 7 years ago. Every cell in the body completely turns over in that amount of time. You are an entirely new person.

So you need to test everything again to know what you are dealing with. I know it would be expensive, but it isnt wise to "speculate" with adding additional HCL and bicarbonate unless you know exactly that you need to.

I am curious for those who have both DQ1 and DQ3 what your confirmed intolerances are? Looking for correlations. I am DQ1 subtype 6 and DQ3 subtype 7. I dont know if the subtypes make a difference. But if you have my exact genetic make-up, I am curious what foods bother you.

For me so far the ones I know for CERTAIN bother me:

Gluten

Legumes - beans - peanuts - soy

Citrus

Nightshades

Apples

**The above foods produce a consistent set of symptoms within 24 hours of ingestion. Some within hours.

Then there are foods that I am not 100% certain because it isnt consistent:

Most dairy - only eat 24 hour fermented goat yogurt where all of the lactose and casein is broken down

Eggs

Rice

Corn

Pork

You?