ShayFL

Diagnosing Celiac is complicated at best. The fact that you are "gluten lite" can make you have a FALSE NEGATIVE on your biopsy. Since you are going that route (biopsy) (and I think you should), you need to really start eating gluten. Every lunch should be gluten laden....pasta....pizza....big hoagie rolls, beer, etc. Every morning stop somewhere on the way to work and get something with gluten. Bagels, muffins, etc. Sneak it in wherever you can. Eat bagel crisps or the like for a snack each day. Eat lots of it so if you DO have Celiac it will show up with the scope.

Push for the GENETIC tests for everyone.

Here is the thing, there are lots of people who have "no symptoms" or "minor" symptoms but they DO have Celiac. The scariest thing is the unseen/unkown damage that comes from untreated Celiac (i.e. gluten-free diet). Heartburn is a pain in the butt, but you may not know you are developing lymphoma or intestinal cancer until it is too late. These are just two diseases associated with untreated Celiac. While you are going on your merry way eating gluten thinking you have no symptoms, your body's immune system could be attacking your beta cells in your pancreas leading to Diabetes. Or autoimmune thyroid disease. Or any number of autoimmune diseases associated with untreated Celiac.

Of course you will miss your beer and deli sandwhiches, but if you DO have Celiac and dont treat it, your family will miss YOU.

So make sure the diagnosis process is thorough by eating a HEAVY gluten diet before testing:

Ask for a FULL Celiac panel if they didnt run one.

Biopsy

Genetic Testing

And if it were me, with a POS daughter, regardless of the tests, I would go gluten-free (after all testing is done) and see if the heartburn went away. You may also find other things go away that you didnt realize were a problem. This is common.

NO...the essential oil is not for consumption.

I took this brand:

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There is a thread about Neem somewhere on the forums. Others had success with bloating using other brands as well. I liked these because they were small and I only had to take one a day. I took mine in the morning (empty stomach) with George's aloe (4 oz) for a good 6 weeks. But relief came early on.

I've been studying Ayurveda lately with some success in tweaking my diet for my dosha (Pitta dominant). I am now trying "Oil Pulling" for my teeth and gums. Google it. I will let ya'll know how it goes. I just started.

Ironically, your BS can go up even if you fast. The liver spews glucose when it gets low and for some people their livers "overreact" and you get higher BS readings.

I used to have "bloating" all of the time and I dont anymore. It wasnt the SCD that got rid of it. It was NEEM. I felt like poo inside for 3 or 4 days but then the bloating went away and it hasnt returned (unless I eat a crap load of cabbage or something like that). I AM NOT SAYING THAT IT WOULD WORK FOR YOU. But it did for me. Apparently it killed off some buggers in there for me.

Another thing to consider is an Ayurvedic herb called Triphala. Google it.

I hope you find some relief soon.

If you still have the DH or it is coming back....get it biopsied. Super easy and not painful. 10 minutes at the Dermo. Genes mutate. You could be the first one if EVERYONE else has been genetically tested in your family and dont have Celiac Genes. PLUS a very small % of people have GOLD STANDARD DX Celiac without either DQ2 or DQ8. So I wouldnt rule it out just yet.

Kristina....make sure you see your Gyno as bloating can be the only symptom of ovarian cancer. Not trying to scare you, but better safe than sorry. If you have already had that tested and posted and I missed it....sorry. But just had to mention it.

Thank you again everyone!! It is the waiting that is so hard. March seems such a long way off. If he needs the surgery that will be another hurdle as he lives in a very rural part of GA. Tallahassee would be the closest for him. I know how important a good surgeon is!!

I posted this test on here about a month ago and several took it and failed. Let us know how supplementing goes!!

You can find it at any health food store or online:

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Stevia is sweet. One caveat is that if you use too much it will taste bitter. I like it. My daughter hates it. It is a personal thing. So dont buy in "bulk". Buy small to see if you like it.

READ THIS. ALL OF THIS (head injury/sweet cravings related):

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I've read that Betaine HCl might stimulate your stomach to produce more acid and then you can stop taking it!

This is what happened to me.

Right. You either have it or you dont:

Patients with a positive IgA Endomysial Ab or IgA TTG Ab should undergo small bowel bx. Bx should be obtained from 2nd and 3rd portion of the duodenum.

I found that online. You should see about a biopsy. But even if the biopsy is NEG, you cannot assume you dont have it. Ask for a GENETIC test too to cover all of your bases.

That's right. I was NEG for hypothyroid for nearly 15 years (because the lab ranges were WRONG). It WAS all in my head until I showed my doctor the correct lab ranges and got treated properly (and got better).

So do not worry if you get a NEG result. Try the diet anyway. If it works for you, then you have your answer. Even if they still think it is all in your head, at least you will have a healthy head now.

If you are CERTAIN he is 100% gluten-free and no cross contamination at home/eating out/school/etc. Then you might consider eliminating DAIRY too. It may not be permanent. The tips of the villi digest milk and those were damaged based on what you have told us. Many Celiacs have to eliminate dairy at least for 3 or 4 months to allow their body to heal. Once he is all better, you can reintroduce dairy and see what happens (not gluten as that is permanent with Celiac).

I had "no case" according to the labs. But responded to a 100% gluten-free diet with no more migraines, vertigo and neuropathy. Your doctor would have told me to eat gluten like it was going out of style with no concern.

I'd find a new doctor. But then again....deep inside....I'll bet you know the answer. We just dont want to EVER change our diet or lifestyle to get well. Most just want a pill.

I honestly hope that by being "gluten light" that you do not acquire other autoimmune diseases (Type 1 diabetes, Lupus, MS, etc. and/or lymphoma and other cancers associated with untreated Celiac).

If you are CELIAC, you cannot eat "gluten light" and not suffer. Even if you nave NO symptoms, the damage is happening inside you at a cellular level which can lead to any and all of the above.

It is your life and your health and no one can tell you what to do with it. We just give information.

Has she ordered a GENETIC test to see if you have Celiac genes? Maybe that would convince you coupled with the POS bloodwork.

Thank you everyone!! I just spoke with him in depth. He has to take the medication until March when they will do another MRI to see if the tumor is "shrinking". It is not a secreting tumor, it is just putting pressure on the pituitary and causing hormonal defects.

Thank you for your prayers. We need em!!!

Hey everyone....I just found out my little bro has a brain tumor. It is on his pituitary and they suspect it is "benign" even though it has completely messed him up physically and caused depression. His hormones are a mess....so I dont see it as "benign". They are still running tests. They put him on medication immediately to "shrink" the tumor and it is making him quite ill.

He is young at 36 and has a wife and autistic 10 year old son who thinks the sun and moon revolve around "Daddy". He is such a great guy and it breaks my heart to see him go through this.

Prayers needed and greatly appreciated.

I agree. I have had tender breasts for years. But the doc. knows about it and I get checked out every year. Better safe.

How wonderful Chaty!! So glad you are feeling BETTER.

Carrots are VERY high in Fructose. Most people have a "cap" as to how much fructose they can absorb at one time. Seems like you went past your cut off.

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I personally can only eat limited quantities of fruit or I **fart** non-stop. I eat about 2 - 3 servings of fruit per day tops!

You sound anemic. Anemia can cause headaches....migraine types. You cannot possibly be getting enough protein and iron from just "fruits and veggies". I have a Phd in Holistic Nutrition. I saw it time and time again.....strict vegans who became anemic and protein deficient. I was vegan myself for quite some time because I thought it might be healthier. There are many books and people who will lead you to believe this. I bought into it for awhile. And I did it by the book. Anal. Made sure I got exactly the right nutrients everyday from organic/fresh and often local. I went to Hippocrates Institute to learn how to sprout, prepare, etc. I still got SEVERELY anemic and very very sick.

I now eat a "mixed" diet and feel very WELL these days.

I see where you are coming from Amy. Mine used to be low too. If something prevents you from processing and digesting fats then it will be low. Gluten can do this, but so can other things.

The fact that you improved symptom wise on a gluten-free diet is MORE telling.

You can start noshing on tons of gluten for the next 3 months and get a FULL celiac panel run plus biopsy for a gold standard Dx. Or you can eat gluten-free and never look back. Some use Enterolab to test for gluten intolerance (doesnt Dx Celiac). You can get the genetic test too either through your Doctor or Enterolab. That would just be another piece to the puzzle (still no Dx).

You have options. Do what feels right for you.

A lot of research is very interesting....but somethings in this article sound sketchy to me:

The thyroid is also "responsible" for the development of autoimmune system diseases.

They pulled the thyroid out of a hat here. Thyroid regulates metabolism, body temperature, etc. I am sure it has an indirect affect on the immune system, but I have never heard of it implicated in ANY sort of immune dysfunction (as a trigger).

Dairy is a problem for many of us. Could be that Carnation instant is part of the problem. Consider axing dairy at least for awhile.

Eat plenty of healthy fats: nuts, seeds & avacado

Complex carbs, veggies, fruits and whole grains (if you tolerate them).

"barley malt" is a dead giveaway. I had to toss a bunch of my "flavored" tea.

Please dont take this the wrong way, but are you sure she is 100% gluten-free. No sneaks at pre-school or Grandma's house? You arent feeding her Wellshire Kids Gluten Free Chicken Bites? It was just discovered they are NOT gluten-free and actually have a high level. No skin care, shampoo, toothpaste, chap stick that you didnt make sure is gluten-free?

Do you have a "mixed" home? Do you use regular flour in your kitchen? That stuff gets EVERYWHERE and CC is inevitable. If you have a "mixed" home does she have her own toaster, pots and pans, wooden spoons and cutting boards? Her own butter dish, mayonaise, jelly, peanut butter jar and anything else that might harbor bread crumbs from someone else in your home (double dipping)?

Have you checked ALL of the processed foods she eats to make sure gluten-free?

Does she still eat DAIRY? If her villi were damaged, then the tips (where dairy is digested) may still be damaged as she continues to eat dairy (they will stay damaged this way). Many Celiacs have to completely eliminate dairy at least for 6 months or so to allow the villi to heal. Once she is ALL better and no D, you can try to re-introduce dairy (but NEVER gluten).

Some people react to corn just as they do gluten. Ditto for soy.

I wouldnt put her on a tube until I covered ALL OF THE ABOVE. Just me.