Is Celiac Disease really life threatening?

LisaB · Joined: 15 Jun 2005 Posts: 19

Hi,

I may have celiac disease. I was severely anemic 7 years ago, and again this past year. Both times, iron supplements cleared that up quickly (no absorption problems for iron, at least), but this time, the doctor suspected I was bleeding internally and sent me for a bunch of tests.

The gastroenterologist found nothing in my upper GI tract and only mild diverticulosis in my colon. He had a sprue panel (blood test) done, and I'm told my gliadin (sp?) antibody level is 44. How bad is that? (The doc is on vacation, so I have to wait a week before I can talk with him.)

I read a bit on this board and see symptoms I've had for over ten years! The lower right abdominal pain (usually during my period, but now it's most of the time). Joint pain. IRRITABILITY! In the last couple of months, I've developed a mucusy stool. Fatigue for years, cloggy brain, poor memory, all of which I wrote off as being fat & out of shape, stressed with too much on my mind, and re the memory, wrote it off as a bad habit of not really paying full attention.

So I read up on CD, and it's terrifying! The stuff I've read says that if you don't stop eating gluten for the rest of your LIFE, you will get seizures, strokes, lymphoma, brain damage, and so on.

I don't understand it.

I mean, I understand that you need to stop eating gluten for several months or even a year or two in order to heal the damage. Does healing mean the villi in the small intestine grow back? Is there a total reversal of the damage?

And if so, then why can't you go back to eating gluten for a while without risking all the dire diseases?

If you can't eat even minute amounts of gluten, then if you slip on the diet, could you just eat as much as you want for that day without it being worse than if you just had a drop? I mean, once the immune reaction is triggered, it's triggered, right?

Everything I read says there's no cure or treatment. Just avoid gluten forever. Come on, there are allergy medicines for other allergies, why not this one? What about homeopathic treatments?

I'm sure you can tell I'm not happy about this. In fact, I'm terrified. I've had symptoms for years and years, so who knows how bad the damage is. And I've never been able to stick to any diet, so even though it's life-threatening, I can't see myself being too successful with avoiding gluten.

Please help.

aklap · Joined: 02 Oct 2004 Posts: 8531 Location: WI, USA

Hi Lisa,

Welcome to the board! I'm glad you found us.

1st off....please take a deep breath...slowly let it out....OK good!

You will be fine. Just take it one step at a time. It can be quite scary at first - no question about it. As far as all the things that can happen...yes they are a possibility. Will they happen to you? It's hard to say...but I doubt it. If you do have CD...then you need to be GF...100% there is no cheating!

Once you stop eating gluten you body starts to heal. You may feel worse for a while...that's normal...your body is healing. Your villi will grow back when gluten is removed. If you start eating gluten again...that damage re-occurs. You body will react again. There is no getting around this...you must be GF for life...or you suffer the consequences. You body can not handle the gluten molecules - so it reacts. Your body will always be this way - there is no recovery from it. One really great thing...there are very few diseases that can be but into "remisson" just by changing your diet. Think about it...I suspect there are many people out there that would give their eye teeth to be able to feel better and be heathy - just by changing their diet.

As for the Amount of gluten to discomfort ratio...I guess there'd probably be a point where it wouldn't matter. But the idea is to stay away it. At first small amounts may not bother you, but the longer you are GF, the more sensitive you become.

Yes scientists are working on a pill that will allow us breakdown the gluten peptide...that is probably 3- 10 years away tho Sad

CD is not an allergy...your body has a different response with an allergy. This might explain it: http://celiac.celiac.com/st_prod.html?p_prodid=181&p_catid=11&sid=91hH9H1F5Eff1GN-05105097141.5a

You will be able to do this...trust me. Once you realize how good you feel off of gluten - you will not want to go back!!! It's hard...but very do-able. Many of us do it. It's takes sometime, patience, creativity & planning.

I hope you spend some time reading thru our posts. I think this website does a pretty good job with handling the day-to-day GF lifestyle.

If you have more questions...please feel free to ask!!

Good luck!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Shiloh · Joined: 26 May 2005 Posts: 113 Location: Northern Virginia

Great job Al! I couldn't have said it better myself!!
Shiloh
_________________
gf since 3/27/04

Georgie · Joined: 14 May 2005 Posts: 16 Location: Cheshire, UK

Hi Aklap,

Where did you find that gem on allergies? Brilliant & to the point.

Regards Georgie.

Georgie · Joined: 14 May 2005 Posts: 16 Location: Cheshire, UK

I am still awaiting diagnosis, on what I am not sure any more. Confused

The good news is that I am now sure of my food allergies.

Four yrs ago tested for allergies-coffee/chocolate/seafood/bananas.

Re-tested yesterday due to a lot of problems.

sugar, cheese-cows, mushrooms, yeast, monososium glutamate, mixed moulds, bananas, chocolate, coffee. not seafood.

Vit B1,B2,B3, Folic Acid & Biotin all down.

I have taken Vit B12 & B complex for 4/5 wks now. Must have been low before.

I could not believe the change in 4 yrs.

Georgie Rolling Eyes

Shiloh · Joined: 26 May 2005 Posts: 113 Location: Northern Virginia

Georgie,
How did they test you for allergies? Through blood or through a skin test? I'm allergic to chocolate also. Have been my whole life... Ain't vanilla great? Oh, and don't forget Strawberry!!!
_________________
gf since 3/27/04

LisaB · Joined: 15 Jun 2005 Posts: 19

I see that I spent most of my original post ranting. Let me re-ask the questions.

First, thank you Al for the response. I feel welcomed, if not reassured.

Okay, questions:

I've read that if you let celiac disease go untreated (you keep eating gluten), you can get brain damage, peripheral nerve damage, lymphoma, etc. You can die from it. WHY?????

I know one reason is that if your small intestine loses its ability to absorb nutrients, you could die from the malnutrition. Is that the only reason?

Is the intestinal damage cumulative? (It sounds like it's not, since the villi heal if you stay away from gluten. I realize that brain damage is brain damage, and once lymphoma occurs, there are no bets on getting better.)

How long does it take to feel better after you fall off the wagon and have some gluten?

If you ingest a minute amount of gluten, do you get a full-blown reaction or just a smaller one? If full-blown, then once you've done it, why not just enjoy as much wheat as you want for that meal?

What research has been done on trying to find a cure? A pill that helps breakdown the gluten is nice, but it's only one approach. How about gene therapy? How about a pill that makes the intestine resistant to the antibody?

Are there any accounts at all of homeopathic treatments or alternative medical therapies helping? For example, accupuncture, macrobiotic diets, etc?

How about biofeedback to get your body to recognize that it shouldn't be generating antibodies to gluten? WHY NOT???? To me, this ought to be doable.

I've read on this board that people feel worse before they feel better when going gluten free. Why is that? What gets worse, what are the symptoms?

If you have a significant level of the anti-gliadin antibody, why bother with a biopsy? If the antibody is there, you have to stop eating gluten, and getting it diagnosed via biopsy isn't going to change that, right?

Why do people who stop eating gluten get MORE sensitive to it over time? Sounds like you get more sensitive to it over time whether you keep eating it or not, like the sensitivity is progressive no matter what.

Okay, that's a start.

Georgie · Joined: 14 May 2005 Posts: 16 Location: Cheshire, UK

Hi Shiloh, Laughing

As you say shame about the chocolate. Vanilla & Strawberry aren't bad Rolling Eyes

not as good as chocolate.

The test is performed painlessly by holding a metal rod in one hand.
The operator then gently touches a finger on your other hand with metal pen. This is attached to a meter. A box of about 60 glass vials containing different substances is used. Each one is individually tested by placing in a tray attached to the meter. When the meter registers to the top of the guage no allergies. When it only manages a little hiccup - allergy

The test cost me £42.00 sterling but it was well worth it.

Georgie.

tropical · Joined: 23 May 2005 Posts: 10 Location: canada

Hi Lisa B. I see you are still waiting for a definite diagnosis. If you have the celiac condition, you must come to terms with it. Continuing to ingest gluten will continue your symptoms, which will probably get worse. How easy is it to have a way to stop those symptoms just by diet -- no drugs at all!
Your questions have been asked by all of us I'm sure, and we have all learned that the only way to feel well and stop doing ourselves harm when eating gluten, is to adopt a 100% gluten free diet.
As yet there is no other way for us. Research is ongoing and of course, it's not quick enough for any of us!
I can't imagine intentionally eating gluten again. The symptoms are totally miserable and feeling good again is worth anything it takes. Surely the value of our life is great enough to do everything we can to live a long and healthy one. The stuff you read may sound terrifying, but that would only apply if you decide not to stick to the gf diet. Once you have it firmly established it becomes habit.
If your diagnosis is positive, join a local support group it will be a great help to you. Talking one on one with others who are gluten intolerant is reassuring. Hopefully they'll help you understand the way your life must be from here on. Among many other things, you'll be able to get help finding out where gluten lurks. It's amazing.
No doubt other diets that you have been on haven't been as important as this one. If your diagnosis is positive, take a deep breath, determine to learn all you can and get on with enjoying your life. Recovery time differs from one person to another, but you'll probably notice a positive difference early on.
Good luck!
Pat

LisaB · Joined: 15 Jun 2005 Posts: 19

Thanks for the pep talk.

I'd still be very grateful if someone would tackle at least a few of the questions I've posted above.

I understand the need to be rigorous careful about gluten, but that doesn't mean you can't think about other possibilities. The attitude I'm getting here is like, "The Earth is flat, and that is that." Well, I want to sail a bit and peer over the edge of it. So I'm asking questions to see if I can sail towards that edge and maybe find new land. I'm not asking you to come along, just to share what you know.

Ya know, autoimmune disorders ARE responsive to things like meditation and hypnosis and biofeedback. Why NOT try these?

Sure, if you're okay with living GF, then that's great. For me, staying on any kind of diet for even one day just doesn't work. Until I reach the point where the consequences are pain and diarrhea, I'm not going to be motivated enough. And the way I am, I'd probably accept the pain and diarrhea. What scares me is losing the ability to digest food at all, or developing lymphoma or risking brain/nerve damage. I want to know how much of a risk these are if I don't go GF.

I've had indigestion for maybe 10 years now, and I had a bout of severe anemia about 6 years ago. Was I gluten sensitive then? Do I maybe have another few years before I need to face being GF?

Well, I see the doctor in 2 days, and maybe HE'll answer my questions. Problem is, he'll likely want to do more tests, and my insurance won't cover them and I can't afford them.

aklap · Joined: 02 Oct 2004 Posts: 8531 Location: WI, USA

aklap · Joined: 02 Oct 2004 Posts: 8531 Location: WI, USA

Lisa,

I have attempted to answer your questions....

I've read that if you let celiac disease go untreated (you keep eating gluten), you can get brain damage, peripheral nerve damage, lymphoma, etc. You can die from it. WHY?????

I know one reason is that if your small intestine loses its ability to absorb nutrients, you could die from the malnutrition. Is that the only reason?

The Lymphoma could kill you by itself. Peripheral nerve damage is not likely to be fatal, all though affects any nerves OUTSIDE of the spinal column. If it effects nerves - it's very possilbe there could be motor involvment. It if hits the heart...it would not be good. That is one type of autonomic neuropathy.

Is the intestinal damage cumulative? (It sounds like it's not, since the villi heal if you stay away from gluten. I realize that brain damage is brain damage, and once lymphoma occurs, there are no bets on getting better.)

Damage will occur anytime gluten is ingested. If your intestines are fully healed, it will start the process all over again. If they are not healed damage will continue worsen.

How long does it take to feel better after you fall off the wagon and have some gluten?

This is different for each person. Everybody has different sensitivity levels. It could be hours...days...weeks.

If you ingest a minute amount of gluten, do you get a full-blown reaction or just a smaller one? If full-blown, then once you've done it, why not just enjoy as much wheat as you want for that meal?

This is different for each person. Everybody has different sensitivity levels. Sure you could do that if you want..you're only hurting yourself...but I wouldn't recommend it.

What research has been done on trying to find a cure? A pill that helps breakdown the gluten is nice, but it's only one approach. How about gene therapy? How about a pill that makes the intestine resistant to the antibody?

I'm sure this will happen. I am unware of gene therapy. That doesn't mean it doesn't exist somewhere. I suspect other genetic disorders will get higher priority.

Are there any accounts at all of homeopathic treatments or alternative medical therapies helping? For example, accupuncture, macrobiotic diets, etc?

As I said in the prev. post...these might help with the symptoms for awhile. Macrobiotic diets would help with over-all stomach health...but I don't think it would completely solve the issue at hand.

How about biofeedback to get your body to recognize that it shouldn't be generating antibodies to gluten? WHY NOT???? To me, this ought to be doable.

I don't know a great deal about biofeed back. I have not seen any research to show that you can reverse your body's reaction other than removing gluten. If you find such research, please let us know!

I've read on this board that people feel worse before they feel better when going gluten free. Why is that? What gets worse, what are the symptoms?

As your body heals and purges itself of the poison people do feel worse. I do not know the medical reason behind this, I just know that people experience this. Possibly you doctor will answer this for you. The symptoms maybe the same that you experienced before...again everyone is different.

If you have a significant level of the anti-gliadin antibody, why bother with a biopsy? If the antibody is there, you have to stop eating gluten, and getting it diagnosed via biopsy isn't going to change that, right?

You're right...if you can deal with having a dx will blood tests alone...No problem - go a GFD and stay on it. I went GF because I could not function while consuming it. Blood tests & biopsies came back negative - I decided to listen to my body. Most doctors will check for villi damage. But ultimately, it's up to you to decide if you want to do ANY medical procedure.

Why do people who stop eating gluten get MORE sensitive to it over time? Sounds like you get more sensitive to it over time whether you keep eating it or not, like the sensitivity is progressive no matter what.
As you remove things from your body, you become more sensitive to it. Think about when you are in the dark...your eyes are more sensitive to light until they become used to it. Think about drinking...if you rarely or never drink...you get drunk on very little alcohol. It just the way your body metabolizes things.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

LisaB · Joined: 15 Jun 2005 Posts: 19

Al, thank you for the links. I checked most of them out last night (the server for one must have been down) and got so involved with reading that I didn't get back here to thank you. They didn't answer all my questions, but they gave me a much better understanding of the diease.

And thank you [b][i]very much[/i][/b] for attempting to answer my questions!

[quote][b]I've read that if you let celiac disease go untreated (you keep eating gluten), you can get brain damage, peripheral nerve damage, lymphoma, etc. You can die from it. WHY????? [/b]
<snip>
The Lymphoma could kill you by itself. [/quote]

Yes, I know lymphoma can kill. I was asking how CD leads to lymphoma. It sounds like something else besides malnourishment is going on.

Well, my life is just so much fun. I went to the doctor's this morning, and he says the anti-gliadin antibody, the only part of the sprue panel that was positive, is the least specific indicator and he doesn't think I have CD. But I asked if intestinal lymphoma might be a concern and his answer was, "Lymphoma is always a concern" and because I brought it up, he wants me to go have some other test that my health insurance won't cover and I can't afford. (He also wants the biopsy, but he will wait till the insurance will cover it.) Well, I can't start worrying about lymphoma. If I have it, it's been there for years. And I can't fully dismiss the possibility of a problem with gluten, even if it's not CD, because the description of silent CD fits me too well.

[quote] I went GF because I could not function while consuming it. Blood tests & biopsies came back negative - I decided to listen to my body.[/quote]

I agree with listening to your body when the results are so obvious to you. My body doesn't have pain from gluten. it was just the anemia, and we're still unsure of the cause. The other symptoms can all be attributed to other things, it's just that I have so many of the ones in the description for CD.

[quote]But ultimately, it's up to you to decide if you want to do ANY medical procedure. [/quote]

Of course, but that wasn't my purpose in asking the question. Why do doctors hold off diagnosing CD until they have a biopsy when the sprue panel blood test show positive results?

I did ask some of my questions this morning, but my doctor was focusing on the tests he wants me to get and trying to find a way to deal with my insurance to get them.

I'm left with one more question: If you're sensitive to gluten but it's not CD, will it still cause the same problems untreated CD will cause (PN, seizures, lymphoma, osteoporosis, etc.)?