Anyone know anything about Celiac disease? nt

[arthritisR_US]

[Warpy]

1. It's a potentially life threatening problem with digesting wheat

that destroys the linings of the intestines. Blood tests aren't reliable but they can show which patients should go on for a colonoscopy and biopsy to nail the diagnosis down.

Patients have to eat normally, including wheat, until the test is done as celiac reverses quickly on withdrawal of all sources of gluten.

Avoiding all gluten products is challenging and expensive. Anyone who suspects celiac needs to have the scope done and the diagnosis confirmed first before making any dietary changes.

[MindMover]

2. I will suggest exactly the opposite of Warpy ... change your diet ...

ASAP ... and you do not have to do a colonoscopy or biopsy to diagnose ... and celiac does not reverse quickly ...

Warpy is correct in that it is more expensive but you can avoid gluten products by just reading labels ... you can start by avoiding all bread products ... shop your organic isle and pickup gluten free waffles for your breakfast and do not eat any bread with your sandwiches unless it is gluten free bread ...

That is a start and if you need more info ... you can email me direct ...

[Warpy]

4. It's not as easy as all that for a long time

The doctor is the best resource in this one. However, not changing your diet before a colonoscopy is essential because the damage to the lining does reverse quickly once wheat is withdrawn.

It's the gold standard for diagnosis.

Don't adopt this sweeping a life change unless that diagnosis is confirmed.

[arthritisR_US]

6. I have had so much chronic symptomology but

going through my husbands care this last year and me Mum's (they both passed this year) I just put the symptoms in file 13. Since Roberts passing in Sept, things have gotten worse. Today I can't even take a deep breath or sneeze without trying to stop it because of excruciating pain. The rib cage is killing me and I haven't done anything to injure them. I have been extremely low key because I just got over Shingles and then pneumonia. The Shingles emergency dealt with morphine shots and then prednisone and anti viral meds.
Doing a search of the past years symptomology I really think it may be Celiac, I have so many autoimmune buggers.

[cyberswede]

14. The rib cage pain sounds like pleurisy

I've had that with pneumonia a couple times - very painful when you breathe, and especially so when coughing or sneezing.

http://www.mayoclinic.com/health/pleurisy/DS00244

The sharp, fleeting pain in your chest that pleurisy causes is made worse by coughing, sneezing, moving and breathing, especially deep breathing. In some cases, pain may extend from your chest to your shoulder. You may find relief from pain when you hold your breath or when you apply pressure over the painful area.

You might consider takeing care of the chest pain before you explore Celiac - the chest pain sounds more acute.

I'm very sorry for the loss of your loved ones this year.

[arthritisR_US]

15. I've had pleurisy before brought on by immune system attacking the lining of my lungs

but this was so much worse and of such a short duration (only that one day and then gone by the next morning).

Thank you so much for your kind words. This has been a hell of a year for me. January 1st I was called to the hospital for my Mum who had fallen ill with the flu and she then passed on the 21st. Three weeks later Robert was diagnosed with cancer and then two weeks later we had to ring 911 and rush him to the hospital. During that stay his father passed away. Then in March during our second crisis which again landed him back in emergency, during that time his sister (who is not only a sister but a best mate to us both) her only daughter was killed in a car accident, leaving behind two young girls and broken hearts. September Robert died and then my cousin Karen died the first week of November.

I think my body is in rebellion against me right now in response to it all.

Honestly, when I read your post it made me cry. They were warm tears.

Thank you!

[pnwmom]

17. There is a simple blood test panel that will pick up many-- but not all -- cases

of gluten sensitivity. And the other poster is right--- for the test to work, you need to be eating food with gluten in it. So have the blood test and see what it says. If you're positive, you will probably be advised to eliminate gluten. If you are negative, but still have symptoms, you might have a "false negative" and your doctor might tell you to do a trial without gluten. It's not easy though, because there are so many sources of gluten, so you have to be vigilant to get a reliable result.

But as the other poster indicated, going gluten-free can be a pain in the neck. Having the positive blood test can help, if nothing else, to motivate you to stick with the diet. If you've gone on the diet because you're just thinking it might be good for you, you're less likely to get the best result, even if you do have gluten sensitivity (because you might not be careful enough).

[pnwmom]

22. And I have a different point of view.

The tests for classic Celiac won't work if you haven't been eating gluten in the months and weeks before the test.

So keep eating gluten till you have the blood tests (which should include both the test that is most specific for Celiac AND the older tests for anti-gliadin antibodies.)

If you test positive for the blood tests, then you almost certainly have Celiac and should go on the diet, with that diagnosis.

If you test negative, you're not in the clear, unfortunately. Some people with non-Celiac gluten sensitivity don't get positive results on any of the blood tests. But you can still eliminate gluten from your diet and see if your symptoms improve. But you have to be just as scrupulous eliminating gluten as someone with officially diagnosed Celiac would be, or you're really not giving the diet a chance.

I tested positive on two of the three blood tests. Some doctors would have followed that up with an endoscopic biopsy to look for signs of Celiac. My doctor said I should save the money and try the diet. Since an endoscopy wouldn't reveal anything about my worst symptom (lower intestinal bleeding), he was right. If I had had a negative biopsy, all that would have shown is I didn't have classic celiac -- but it wouldn't have explained anything about the bleeding.

So I went on the diet and within a few days the bleeding, other GI symptoms, and even non-GI symptoms (like fibromyalgia) disappeared.

Good luck on your own path to health!

[arthritisR_US]

3. Thanks, last time I was supposed to have a

colonoscopy I couldn't get out of the car. I need a new head space...

[Warpy]

5. They anesthetize you now

You'll know it's over once you ask them when they're going to start.

Once you've done the prep, the worst is over.

[arthritisR_US]

7. I could deal with that. I will have to inquire because

thatbecause that wasn't an option I was given and my nerves won. I lost.

[pnwmom]

23. Actually, the blood tests ARE reliable for people who have classic Celiac.

So if you get positive results on the blood test, that correlates very well with positive results on an endoscopic biopsy. (Not a colonoscopy.) Many doctors these days don't bother with the biopsy if the blood tests are clearly positive because the blood tests correlate so well.

For the rest of us, yes, it can be expensive to eliminate gluten. But some people with non-Celiac gluten sensitivity still need to do it, if they want their symptoms to resolve and to avoid increasing the risk for a host of auto-immune diseases.

[MindMover]

8. I have celiac, my wife and daughter have celiac ....

and Warpy does not know what he/she is talking about ...

Before a endoscopy you are given conscious sedation ...

[Warpy]

9. Which is anesthesia.

How long have you been a doctor or nurse?

[MindMover]

10. Since 2001 .... how about you ...

[Warpy]

11. In health care starting in 1962

RN since 1982.

You might want to look some of this stuff up.

[MindMover]

12. My family has been living with this terrible disease for a very long time ...

so looking it up has been our top priority ...

and your medical/healthcare community has not been exactly helpful in determining exactly what was happening to us for many years ...

it took until the 1940's to even give it a proper name and then it wasn't until the 60's that they knew it could be hereditary ...

Your misinformation/misunderstanding about the disease is not helpful ...

The standard today for diagnosis is a blood test, not an endoscopy ...

and changing your diet ASAP is recommended if you even have a hint of having celiac disease ...

and it takes months if not years in my daughters case to heal, if you can heal that is ...

some patients never do heal ...

[pnwmom]

24. But you mentioned a colonoscopy, and that isn't used to diagnose Celiac. nt

[pnwmom]

18. I have gluten sensitivity. And Warpy is correct

that it is important to continue eating gluten till you have the tests for Celiac/gluten sensitivity, because they depend on having gluten in your system.

[MedHelp]

13. me

I do not think so

[pertilotte]

16. Celiac

I myself have ulcerative colitis. I do have a couple of friends who have Celiac and they told me that as soon as they were diagnosed and changed their diets (gluten free) their condition improved dramatically. One of them makes a killer chocolate cake that is made with cooked quinoa instead of the traditional flour, and I can tell you, it is beyond delicious. So, yes, with some studying and a willingness to change your diet, you may feel well in a very short period of time.

[libdem4life]

19. Check out Wheat Belly, by William Davis, MD... free, at the library. Read it. Read his case

studies. Just Do It. My niece is full blown celiac. I'm not, but into it just a short time and see differences already. Davis makes a case that Everyone should be gluten free...it's not that hard unless you're addicted to snacks and fast food. You have to cook your own meals and make your own snacks, but there is life after the glutenous grains. And it often cure whatever ails you.

Even if you think it's Woo Woo, why not try it for a month. My small changes started within the first week. And it's a really fast way to lose weight, helps diabetics, joint pain (I had a little,now I have less), my cravings went away, just illness in general. Had experienced some incontinence, almost gone. One week.

The internet is full of gluten free food you can make. but it's mostly fruits, vegetables, dairy, fish/chicken, legumes,seeds and nuts. That's plenty of variety to live off. Also, flaxseed meal is entirely gluten free, very fiber-full and healthy, awesome for crackers, flat bread, etc. I'm trying Betty Crocker's Gluten free flour, so will see.

[libdem4life]

20. Here's a great almost instant Flax breakfast...full of protein and fiber

A coffee cup or I use a 4" bowl, no prep needed

Mix right in the cup/bowl ... 1/4 c flax seed meal...1/2 t baking powder ... 1/4 t stevia (I used about a half a teaspoon of honey) ...1 teaspoon cinnamon ... 1 egg ... 1 t oil (olive oil works well...can't taste it) I add walnut pieces ... I think fruit might make it a bit mushier.

Microwave for 1 minute and 15 seconds. Let it set for about 5 minutes. It will pop right out and you can put butter or anything you want on it. Awesome, quick and would probably keep in the frig or lunch. Has the consistency of a muffin. I'm going to try it next making a double batch and putting it in a 6-muffin tin and freezing them.

[Lydia Leftcoast]

21. When my grandmother was about my age, she began having digestive symptoms

including abdominal pain and sudden attacks of diarrhea. She had it for the rest of her life, and the doctors told her that she had diverticulitis, which may have been the case. She lived with us for many years and with my mother and stepfather until about three years before she died, and I remember my mother saying to her just before meals, "Have you taken your Immodium?"

Flash forward 15 years after my grandmother's death, and I start getting those symptoms. My first thought was "Cancer?" But then I stopped and thought about whether anything had changed in my diet.

Well, I usually cook Asian style, much more Indian and Southeast Asian than Chinese or Japanese (my own attempts at Japanese food don't taste right to me), or make a ratatouille or a moussaka or something like that. I very rarely eat sandwiches or major pasta dishes.

The weak before the nasty digestive attacks, I had eaten an unusually large (for me) amount of bread, wheat pasta, cereal, and pizza. It wasn't planned. It was just the way things worked out. I figured that eliminating gluten, while difficult (I actually love bread--I just don't eat much of it), might be a good test to see if my symptoms went away.

They did. I eliminated bread, wheat pasta, gluten-containing cereal, and pizza, and my symptoms went away. Not only that, my joints hurt less, the psoriasis-like rash on my face began to fade, and the belly fat I acquired over the past two or three years is going away, gradually, but enough that I notice it.

About two weeks after I started the diet, I went to a social occasion where they served pie. Thinking it couldn't hurt, I had a slice. The next morning, my digestive system rebelled. It rebelled again a week later when I thoughtlessly ordered sesame chicken (breaded) in a Chinese restaurant.

My youngest brother, his son, and I have birthdays around the same time, so my sister-in-law asked if I would bring the cake for the celebration. She told me to get a flourless chocolate mousse cake from a local bakery. When I arrived at the party, I remarked that it was a good thing they had decided on a flourless cake, because I was experimenting with being gluten-free. My brother, a doctor, surprised me by saying that he had been gluten-free for over a year after experiencing the same types of symptoms I had had.

So that's my grandmother, my brother, and me, all developing these kinds of symptoms at roughly the same age. Strange that our mother never had any of these symptoms.

Eating out is a pain, but fortunately, there are restaurants in Minneapolis that either label their gluten-free dishes or specifically provide them. I've found a good brand of brown rice pasta, pure buckwheat soba noodles (not the cheap ones with wheat flour added) are gluten-free, and soft white corn tortillas make nice accompaniments to stews and soups.