ShayFL

I do not have an "official" diagnosis. The genes and positive response to the diet is enough for me. If I have future health concerns, they can treat those. I do not see why having an official diagnosis would change future care. You will need to tell doctors/hospitals that you are "allergic" to gluten. But other than that........

I find the homemade breads taste yummy. I have yet to try any pre-packaged stuff I like. Better to make at home.

I make my own soups with Imagine broth. Throw in frozen veggies, meat and seasoning. So easy. You can also throw in par-boiled rice or rice pasta. Freeze for later what you dont eat now.

Acetone breath I believe they call it. Diabetes breath.

Im just going by my lab (Lab Corp). 4-10 is weak positive and anything above 10 is strong positive.

I only got a (1) on everything. And my IgA is low normal.

But I have 2 genes for gluten sensitivity, one of which is DQ3 and DQ1. DQ1 is implicated in nero symptoms without any other obvious cause. This is me, so I am gluten-free and have already made neurological progress. But I have to be patient for complete healing.

I didnt have a biopsy as I am high risk for perforations.

I went into an Indian market just yesterday that was next to my daughter's summer camp. Every package said it was processed on machinery with wheat!! Even the plain herbs and spices. So I got out of there. I felt gluten everywhere. Everything felt powdery.

Mangos are from the same food family as poison sumac. Many people are sensitive to them. You might try a different kind of fruit smoothie.

I think it would have been very helpful if they had done full celiac panels. Also compounding the problem is that each lab has a different range. My lab would put your boys "boarderline". 3 U

They should have also done EMA, tTG IgG, Antigliadin IgA and Antigliadin IgG.

If it were me, I would wait for all of my results to come back. Your boys are young and you can control what they eat. So if you come back positive with your positive biopsy, you can safely try ALL of you on a gluten-free diet and see if the diet speaks for itself. Not to mention it is soooo much easier to have a 100% gluten-free house. So much.

Also, you can opt to pay for an Enterolab genetic test for all of you. Cheek swabs, so no blood draws for your little guys.

Non Dairy Creamer.....remember "natural and artificial flavoring" can have gluten.

Animal fur doesnt bother me. Up till 6 months ago we had 4 dogs. 3 Great Danes and a Standard Poodle. The seniors both passed recently (6 mo ago and just 2 weeks ago we lost our 13 yo Great Dane). But I know hair.....LOL And it ends up in the most unusual places.

What are the ranges?

I soooo wish I could eat the cocunut flour. But I have tried 3 times and gave me horrible tummy pains for 2 hours after eating it every time. Like crawl into the fetal position and pray for an end. I do fine with coconut milk. I didnt test allergic to coconut on either skin prick or ELISA. But the flour just doesnt agree with me. Maybe it is "too much fiber" at one time.

Teff has a unique flavor, but in cookies with maple syrup and almond butter....it is just yummy!! I want to try tortillas with it, but have not gotten around to it. Ingeri I think it is called in ethiopia. They use a lot of teff.

Just throwing this in here. I wear contacts. And for years, I wore the extended wear and I slept in them. Only taking them out once a week for a soaking. Well, I started to have some infections with my eyes and went to my eye doctor. The infections were easy enough to treat, but he said that my eyes were "growing new blood vessels" to make up for the "lack of oxygen" they were getting by extended wear. He said my case was not bad yet, but if I kept wearing them at night, that it could get really bad and effect the function of my eyes. I forget what it is called. Anyway, that scared me. I am an artist and very visual. So I take them out every night and I must say that I do not get infections anymore and my eyes are not as "fatigued". They feel fresh.

Regardless of what the FDA says, common sense sometimes has to take over. Your eyes need to "breath" and nighttime is when cells do most of their repair work. It just makes sense to take them out.

I have been studying hairloss lately. Mine has thinned, but my sister's looks really sparse. I have read some interesting research that when Ferritin gets above 40 hair will start to grow back. I am at 19 and am shooting for 50. Taking iron supplements right now. I dont want to go above 50 because lots of research says this can contribute to cardiovascular disease and diabetes. Diabetes runs in my family. So shooting for between 40 and 50 on the Ferritin.

Has yours been checked? I keep copies of all of my labwork in a file for reference.

His IgA is very low. I always question these ranges 34 all the way up to 305. That is quite a range!! So here is my thinking. Let's say someone has IgA of 250 and they are celiac. They are capable of producing A LOT of antibodies. So they get a celiac panel and it comes back positive.

But then you have a celiac who has IgA of 40. They are reacting to the gluten/gliadin, but their bodies are not capable of producing hardly any antibodies. So they get a (1) on an IgA antibody test which is "normal". Meanwhile, the gluten/gliadin is damaging tissue.

Just my thinking.....

And they should say. So I hope they stay scared. I realize that they cannot list every possible allergen/sensitivity. But EVERY ONE of them (food manufacturers) should have to list: Gluten/Wheat/Soy/Dairy/TreeNuts/Peanuts/Eggs/Corn/shellfish

These are the big offenders.

Yes it did. I would go gluten-free if I were you. With a pos. endo and a pos. response to the diet. You should be able to get a Dx.

Here is my story:

I was born a "blue baby" unable to breath. They were able to revive me, but I was placed in an oxygen tent and remained there for the first 6 months of my life. My Mom did not breast feed as it was just too much hassle for her to do so. I was often sick. Strep throat was my biggest nemesis, next to "stomach flu" which I seemed to have an awful lot of. I was on antibiotics throughout childhood. My teeth were rotten. Every tooth had a filling. Glasses. No stamina for sports or outdoor activities, so I became a bookworm.

Puberty hit me hard. Horrible periods with excruciating pain and very heavy bleeding. They would last 10 - 14 days. They left me completely wiped out. Finally when I was 15 my Mom took me to a gyn. He prescribed BC. And they did reduce my periods to only 2 - 3 days, light bleeding and very little cramping. I was grateful.

Appendix ruptured and I nearly died. Developed peritonitis which eventually led to a lot of scar tissue in my abdominal cavity. I lived my teen years in a complete state of exhaustion. I slept all of the time. I slept in school whenever I could. I slept on lunch hour. I slept in homeroom. Study Hall. P.E. when I could get away with it. I took a nap when I got home. I ate, bathed, and went back to bed. Weekends found me in bed till well past noon. I just slept through it all.

Lots of allergies and chemical sensitivities. Mom had to find new detergents, shampoos, etc. all of the time as I would react to them.

I developed bulemia in my teens as well. I ate (lots of gluten filled foods like pizza, donuts and bread). I purged by exercising. I still slept a lot into my 20's and would get this strange "coma" after eating. Literally would ave to nap or I would pass out. So I would eat my lunch at work and then sleep in my car for 45 minutes. A timer would wake me to go back to work. Then I felt like I was in a total fog all of the time. I would drive home sometimes and have to pull over with the "coma" feeling and nap for awhile.

Hypoglycemia.

Overweight.

Exhausted.

I got married and got pregnant soon after. My pregnancy was beautiful! The best I have ever felt in my entire life. I thought that God had finally healed me. But it was short lived. 2 weeks after giving birth, I woke with severe vertigo. It never completely went away. Therapy has helped me deal and now I only spin a little. A few times in the past 12 years I have had extreme again.

While trying to take care of my newborn, I started having anxiety. I was sweating like crazy. And I started losing a pound a day. I ate like a horse and the weight just fell off. I couldnt sleep. My husband accused me of anorexia. I was hearing voices. Yes. And they were telling me to kill myself.

I went to the doctor who said I just need a shrink and some prozac. I was desperate and went to the shrink, but refused the drugs. This craziness went on for about 6 weeks. Several times I thought I was having a heart attack. Still my doctor said I was normal. Just stress from having a baby.

Then things changed. I started to sleep again. And sleep a lot. I gained weight. I had zero energy. I became profoundly depressed. I didnt have the energy to do anything but feed the baby. Husband had to do EVERYTHING else. Still had the vertigo feelings. But I was too tired to care. I just slept. One day my sister says, "Have you had your thyroid checked?" I didnt even know what a thyroid was. But had the doctor check it right away. It came back hypo. And I learned that what had happened to me for those 6 weeks was hyper as my thyroid dumped ALL of it's stored hormones. Post-pardum thyroiditis.

I just got sicker and sicker. Migraines. Neuropathy. Constant gas, bloating and d.

And there was no Google back then. So I enrolled in Clayton College for a degree in Holistic Nutrition. I have a Phd. I tried every diet I studied and nothing helped. I even went "wheat free" with no luck. None of my books talked about Celiac except in passing as a rare genetic disease.

I tried it all. Acupuncture. Cranio-sacral. Rolfing. All sorts of diets. All sorts of supplements. Bio-feedback. Hypnosis. Psychotherapy. Reiki. Faith Healing. I hit an all time low when I called a 24 hour prayer line and got a recording. I almost gave up on myself, god and life. Almost.......But something has kept me going. I am a fighter.

My research on neurological disease with unknown etiology led me to Celiac. And here I am 2 months gluten-free. And my migraines are gone!! No more bloating, gas or d. I only go 2 or 3 times a day instead of 5 or 6. My skin looks better and my eyebrows are growing back in. This is the most hopeful I have ever been that I have found the answer. I will never knowingly eat gluten again. Never!!

I just tried "Nomato". You can find it in the gluten-free Mall. On the left. I think it is under "gluten-free condiments" but not certain. It is pretty good. A very bright red compared to regular tomato sauce, but quite tasty. I poured t over meatballs last night. Yummy!!

I find I tend to bake with rice, sorghum, amaranth, tapioca and arrowroot the most. I also have teff which I make delicious cookies with. Baking soda. Baking powder.

I dont use xanthum gum. I use ground chia seeds. Great binder. High fiber and essential fatty acids. The xanthum gum adds zero nutrition. I use the same amount that is called for in xanthum gum.

Ive had this cookbook for about 2 weeks and love it!! Simple recipes. Simple ingredients. And the back of the book is a gold mine for substitutions. So if you want to bake one day and discover you are out of eggs, she has a sub. Or sugar. Or anything really. Tells you what flours do what and how to combine them. I highly recommend, "Cooking Free".

https://www.celiac.com/catalog/product_info...products_id=462

Those sound good. Wish I could have eggs and white sugar.

But I did find a Teff/Peanut butter recipe on Bob's Red Mill site and I replaced the PB with Almond Butter. Everyone who has tried them, loves them.

Shay

And make sure you are addressing any deficiencies you have. Many nutrients affect blood sugar:

VITAMIN D AND DIABETES

Gabe Mirkin, M.D.

A study from Bulgaria shows that giving vitamin D supplements to diabetics during the winter markedly improved control of their blood sugar levels.

The majority of North Americans require sunlight to meet their needs for vitamin D because they do not meet their needs from the foods that they eat. Many people in temperate climates therefore are deficient in vitamin D by the end of winter. Lack of vitamin D impairs a person's immunity and ability to produce insulin and respond to insulin. This study shows that giving vitamin D pills to Type 2 diabetics during the winter improved control of blood sugar levels by increasing the first response of insulin from the pancreas to a rise in blood sugar, and by improving cell response to insulin. If this study can be confirmed, all diabetics should take vitamin D-rich foods or pills whenever they cannot get adequate exposure to sunshine. See report #D222.

The effect of vitamin D-3 on insulin secretion and peripheral insulin sensitivity in type 2 diabetic patients. International Journal of Clinical Practice, 2003, Vol 57, Iss 4, pp 258-261. AM Borissova, T Tankova, G Kirilov, L Dakovska, R Kovacheva. Borissova AM, Univ Hosp, Dept Endocrinol, 6 Damjan Gruev Str, Sofia 1303, BULGARIA

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How is your Thyroid? TSH less than 2? Or ideally less than 1 (for most people)?

This is what I had done:

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Plus antibodies to insulin and my pancreas.

It explains what the HbA1c is.

Fasting glucose will not give you the complete picture. Since celiac is connected to "Type 1 Diabetes" (in children AND adults), you may wish to have your doctor check your antibodies to your pancreas as well.

Do not dispair. You can alter your diet and it will help a lot. Keeping your body as alkaline as possible is a great help at staving it off. Eat fresh fruits and LOTS of veggies and buy some alkaline drops for your water. Not too much meat. Minimize sugar. And make sure your carbs have fiber (or add some). I like Chia seeds (fiber plus Omega 3's).

Daily exercise is a MUST and I credit it to my not having diabetes. I started a regular routine in my early 20's. Most dont start till their 40's when forced to. At least 30 minutes a day is good, but 45 is better if you can. You can split it up. Taking a walk shortly after a meal will help keep it from going too high.

Cats groom themselves non-stop. Their coat is covered in their saliva. She is putting gluten all over her coat. Everytime you pet her, you are getting gluten on your hands. I would find a gluten-free cat food. I have all my dogs on gluten-free food. They lick themselves.

That is my guess.

That is a new one. I am not aware of anything that "kills" gluten. Hmmmm and whole wheat has antioxidents (i.e. vitamin E). I wouldnt trust it personally. But that is just me.

I guess saying "lifestyle choice" makes it sound like something you want to do. And to me that is what the article made it sound like. It lends credence to all of those people that think we are just being "picky" and that there isnt really anything wrong with us. We are just "choosing" to be different. Choosing to avoid something that makes you so sick you cant get out of bed, doesnt seem like a choice at all to me.