ShayFL

Hello and Welcome.

Not all of us get a "gold standard" diagnosis. But what many of us get is a positive response to the diet. If I were you, after all of the testing is done, I would go on a Gluten-free Casein-free diet and see for myself. What do you really have to lose? Symptoms.....

I love the people who log in just to advertise their product......

I have tried lots of products. One was a 1 oz jar for 250.00. My husband would kill me, but I was able to sneak it by using my business PayPal account to buy it. Well it didnt work any better than the Burt's Bees stuff.

The best I have done is to drink lots of water, take my essential fatty acids and avoid processed foods. Lots of antioxidant rich foods like berries. I believe Perricone advocates a diet like this. But I just do my own thing. It has helped.

Mostly I practice acceptance.

When things are processed on the same equipment as wheat, each batch will have differing levels of gluten. For instance, say they processed a wheat product and the very next product was chocolate. This chocolate would have a lot more gluten in it than if 5 batches of chocolate are run and you get a bar from the 6th batch. IMO

Many organs go through a hyper phase before conking out. For instance someone might have hyperthyroid and then go hypo. Or pancreas might be in overdrive trying to keep up with all the sugar someone eats, until it gives out. It happened to one of my grandmothers. She was always shaky and eating sweets and then she got dx diabetes. So it is true that hypoglycemia doesnt always lead to diabetes, but often it does. Esp. with a family history. But anyway, it doesnt matter, it is her deal.

How awful for you and for her. Prayers going up. Stay strong.

Even funnier is that I liked it. ***shrug***

First, sorry that you have gone through all of this.

Make sure they run a complete celiac panel. If all else fails and you can afford to pay out of pocket, you can use a place called directlabs.com They email a req. form and you just have to go to a lab for the blood draw.

We are never hostage to doctors. You can get many tests all on your own by using places like directlab or Healthcheck or Life Extension. Never let them bully you or tell you no if you have deep intuition about something. If they refuse a test, check with directlabs and see if they have it and how much it costs.

I he improves soon.

Potatoes seem to be the worst offenders. Some day I might add back small amounts of tomatoes and peppers and see. After I have healed.

The brain is amazing. As are our bodies. I never believe if a doctor/research/person says "it will never heal", "you will be this way for life", "it's irreversible", etc. Amazing things happen all of the time!!! And brains can regenerate. And new pathways can be formed to take over defective ones.

I read a book about vertigo issues and this researcher came up with a device that you put in your mouth. It stimulates nerves in your mouth which somehow retrain your brain and you get a whole new balance system. The old one fades to the back and the new one takes over. I cried as I read a story of a woman who had such severe vertigo that she spun non-stop for years and this device fixed her. It didnt happen over night, but it fixed her.

I forget the name of the device, but it is in clinical trials right now. According to the book, it has helped people with parkinson's, MS, Mineier's, etc.

This happened to me after giving birth and it had nothing to do with gluten. It was my thyroid. DO GET THAT CHECKED.

You can find chia seeds at most health food stores or buy them online. You can get whole seeds or pre-ground. They do not go rancid fast which is very nice.

I have never used xanthum gum, so do not know the difference. I just started baking and realized I didnt have any. So I looked through my frig/pantry to see what would work as a "binder". Chia gives off a mucilage and I just reasoned it would work. And it has. I just used the same amount called for as xanthum. It isnt "snow white" so will give very minute flecks to the recipe. Something I dont care about. But I guess if you were making a white wedding cake, maybe you wouldnt want it.

I've been baking up a storm! And loving it.

I highly recommend "Cooking Free" cookbook. I went to the bookstore and there were at least 25 books on gluten-free, but I have more than one issue. I also cannot have dairy, eggs or corn. Her book has all the subsitutions for the common allergens and nifty conversions and such in the back. Makes baking a snap!

It all depends if you want an "official"diagnosis. I didnt need one. After suffering for 12 years, I am happy the diet is helping me. Im not going to go back to migraines just for a Dx. But that is just me.

But I do feel that if you do not go for the "gold standard" biopsy, that you need to basically accept you have it and adhere to a gluten-free diet for life. At some point if you add it back in and dont get symptoms, you could be damaging yourself without knowing it which can lead to cancers and diabetes just to name a few. So if you dont get the Dx, you might have a "false" sense of security and start eating it again someday. I you cannot trust yourself to stay gluten-free for life, then you might NEED a biopsy to give you the reason.

I normally sleep pretty good. But sometimes an emotional issue will keep me up. I like GABA, it calms me down without any side effects.

Addressing any underlying trauma that might have happened around that age (7-8) could help too. (and that isnt new agey......LOL)

Hopefully your GI appt. will go well and you can learn more. It sounds like the light bulbs are already going off.

I had a really great job in my early 20's. 20K a year with full benefits. And this was over 15 years ago. 2 weeks vacation paid every year. I liked all of the other employees. I got to meet interesting people all of the time and I got tons of overtime money during tax season (CPA firm). I worked there for over 3 years. The only problem is one of my bosses kept trying for "favors". I got really good at avoiding his come ons most of the time. But some times it was impossible (when he would call me into his office and ask me to close the door). It made me extremely uncomfortable to say the least. And I actually started to get fearful that he might force himself on me cuz I kept telling him no. This is a different kind of discomfort and fear than you have, but it was still discomfort and fear. So I made the decision that life was too short to live like that. And if I had to take a lower paying job I would. I gave 2 weeks notice and had not found a job when my time was up. It took me 4 months, but I found a BETTER paying job, right next to my apt. for more money and NO male bosses. I was so pleased.

Think positive and you might just find that something BETTER is waiting for you. No regrets. You are young and sounds like a very good employee. Other employers will WANT YOU.

With my ataxia/vertigo feelings, I often feel like I am drunk but without all of the good feelings.

It's called "Nomato" and I found it in the gluten free mall advertised all over the sides of this forum. I will warn you that the color is something to behold A very bright red. Much brighter than regular tomato sauce, but it is pretty good. My family really liked it and they will be honest. In fact, I made a homemade salad dressing the other night and my daughter said, "Sorry Mom. This tastes like dirty gym socks." How would she know that?......LOL

I can only say sorry you are feeling this way. I know the dizzies are the worst. I dont slur, but I fumble a lot. Hope you feel better soon.

My daughter is 12 and she makes her own breakfast and packs her own lunch. That really helps me. I work from home, but it is full-time hours. I try to make a lunch that will make for leftovers for dinner. OR I make huge dinners so I have leftovers for lunch. Leftovers are my best friend. I buy these turkey breasts and roast them, so everyone can have leftover meat to pack their lunch the next day. I keep lots of veggies and fruit on hand for them to pack. Plantain chips and corn chips for my daughter. We can eat nuts and seeds and this helps. I do cook a lot and cleaning too!!! I also make my own almond milk, bake, etc. It is a lot, but over time I have found shortcuts.

My best friend has pre-diabetes IMO but will not go to the doctor to test it. Her mother had diabetes and died from complications. So I watch my dear friend get major hypoglycemia sometimes. She shovels candy in her face to make it stop. Up and down....up and down. Her poor pancreas is gonna give out. She wont even check it with my monitor. She doesnt want to know......

What can you do?

I do take a gluten free multi. But it contains soy. It is the only soy I am getting. It is the vitamin E. I have found a rice based vitamin E, so I will be constructing my own multi soon that will not have any of my sensitivities. :0) I will be a job at the health food store reading all those labels, not to mention all those bottles of pills. But I really want to do it right.

But if you make sure you eat a lot of fruits and veggies, you will get good nutrition. And get some sunshine everyday for the vitamin D.

I love corn. And I miss it far more than gluten. And I had a great discovery last week. I baked a recipe from my "Cooking Free" book called Irish Soda Bread. I used sorghum and amaranth flour (it called for amaranth starch but I used plain ol flour), tapicoa (could use arrowroot too) and almond meal. OMG!!! It tastes exactly like buttery cornbread. Exactly. I could not believe it. I just made some again tonight and the trick is not to eat the whole thing.....LOL

I also discovered "Nomato" from the gluten free mall. It is a sub. for tomato sauce and it is pretty good. I poured it over meatballs and DH and DD gobbled em up. The "Cooking Free" has a great recipe for meatballs/sausage which is easy to make. I just leave out the hot pepper flakes. Great without them.

Really I cannot recommend this book enough. It has really helped me organize and cook.

The other night I made some of the sausage up and made italian wedding soup minus the beans. "Nomato" replaces the tomato. I used rice for starch. Yummy!!

I make homemade almond milk. Raw almonds soaked over night (soaking makes them easy to digest). I use my vitamix and strain. High calcium. Good nutrition. I use chia seeds to add fiber and Omega 3 to my diet.

I use the chia seeds in place of xanthum gum in baking and it works just fine. Adds nutrition. I use flax and water to replace the eggs and it works well.

The "Cooking Free" book has all sorts of subsitutions for egg, dairy, gluten and sugar. All recipes can be modified and she tells you exactly how. It is really neat.

That looks like my list....LOL

I hate complication. I hate measuring precisely. I hate word problems. I hate recipes pretty much. I follow recipes very "loosely". My husband always jokes that if I cook something really good we had better enjoy it cuz it wont taste the same the next time I make it.

What I have been doing is sticking to simple foods: baked chicken, broiled fish, pot roast, turkey sausage (homemade), etc. With roasted or steamed veggies. Whole grains like buckweat, quinoa, rice in the rice cooker. I then season them to taste good.

But I also focus on soups that contain foods I can have and stir-frys. I am baking. I found a simple uncomplicated cookbook called "Cooking Free". I highly recommend it. Even with my inprecise measuring and such, the baking turns out very good. Only one flop and it was my fault cuz I mistook tbs for tsp for baking soda. Yuck!

Anyway, would love to discuss what I do. But I keep it pretty simple.

Some celiacs can tolerate gluten when reintroduced as in they do not have obvious symptoms. But the problem is that the gluten IS doing damage. It is just silent damage for the moment. It can show up later in the form of certain cancers and type 1 diabetes. They are killing themselves by eating gluten. There is "silent" celiac too, people who dont know they have it (lack of symptoms) and do not get diagnosed until they have cancer on their death bed. I wouldnt want that to be me. If you care for this person, you may wish to pass this along. Even if you dont, pass it on.

I agree that trying "natural and uprocessed" oils might be easiest on your body. i.e. avocado.