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dolly

Silent Celiac Disease?

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Hello, I am new and confussed. I hope you won't mind helping me.

Over the weekend, I read an article in a magazine called "First For Woman" about Silent Celiac Disease (SCD) which is not as awful as Celiac Disease but has its own set of issues. When I read the article's description of the symptoms it completely described what I was going through. So, I have gone off gluten for the last 2 days and feel remarkably better.

Here are my questions, since SCD is not as terrible as regular Celiac Disease I figure I would just lay off the gluten as well as I could and just leave it at that. But, someone with Celiac Disease told me that was actually a little dangerous. That I must be tested for this. I really don't want to see a doctor for this because SCD is just a little more obscure than Celiac, so why put myself through all of the bother with a doctor who will only scoff at the notion-especially since I got the information from a magazine. What do you think? Is it all that critical that I get tested?

Thanks for your help!!!

Dolly

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Hi Dolly,

Getting an official diagnosis can be a hot topic around here. Some consider an official diagnosis a requirement and others don't want to go through the head ache. Personally, I would get a diagnosis, if at all possible. The Dr can rule out other diseases and check you for other issues. Look into Entero labs if you want the least invasive test method.

The problem is that in order to get a biopsy for celiacs, you must be actively consuming gluten. So if you make yourself gluten-free and then get the blood work and biopsy, the result will not be accurate.

I have not heard of SCD before. Some people have celiacs without the outward symptoms. But it was my understanding they still needed to adhere as stricktly to the diet.

If you go to a Gastrointerologist, they should have some level of knowledge on Celiacs to Experts on Celiacs. It just depends on the Dr. Depending on where you live, you may be ableto get a recommendation from someone on this site.

Hope that helped a little

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Usually what is called silent celiac disease, as far as I know, is someone who has no symptoms when they eat gluten, but if they are biopsied, their intestine is damaged. So yes, for those people it's important to not eat gluten, since you don't want to go around with a damaged intestine...l the kind of damage celiac does to the intestine can eventually lead to cancer, and if not, make it hard to absorb nutrients properly, which will also lead to health problems down the road.

It sounds like you actually have some symptoms, in which case it's not really accurate to talk about silent celiac though? What makes you suspect you have celiac? Do you have family members with it, or do your symptoms just match the disease? Or do you have symptoms of malnutrition without the digestive symptoms?

Cheating occasionally, especially if you don't have symptoms to tell you when you have accidentally had gluten, is a bit of Russian roulette. How will you know what is too much? All of us have gluten accidents every now and then, and if they are infrequent enough the intestine manages to heal in between. But if you cheat too often the intestine doesn't heal completely between glutenings and you'll get progressively worse, and it's impossible to give a rule about how often is too often because it varies from person to person.

Pauliina

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I have to admit that I am getting a bit confused now. I do not have the symptoms that would suggest regular Celiac Disease.

The symptoms this magazine article mentioned under the title of Silen Celiac Disease are:

Low blood iron/anemia

weight gain

brain fog/memory problems

blue moods/irritability

decreased ability to handle stress

tooth enamel stains/defects

very dry skin

weak, achy bones/joint pain

I have all of those symptoms.

Anyway, thank you for the information on the long term consequences of this disease.

Dolly

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I'm assuming that SCD is someone with celiac disease that happens to be asymptomatic or someone who doesn't have a lot of GI symptoms. Which means you still have celiac disease, and consuming gluten occasionally will cause damage to your intestines whether you have symptoms or not. But it sounds like you do have symptoms.

Since you have felt better the last few days of being gluten-free, I see no reason why a doctor should have a problem if you coming to them asking to be tested. The problem is that many doctors don't know that much about the disease - don't realize that false negatives are very common for both blood tests and scopes. And you need to be eating gluten to get tested. So now the choice is yours: to test or not to test. You feel better already, so if the test comes back negative, are you still willing to commit to a gluten-free diet? Are you willing to go back on gluten to be tested? There is nothing wrong with using dietary response as your diagnosis as long as you can still commit to a gluten-free diet. Some people need a doctor to tell them to go gluten-free.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I only found out about my problem with gluten when I developed DH (dermatitis herpetiformis--as truly HORRIBLE rash).

If you had asked me if I had any other symptoms, I would have said no.

But then I went off gluten (100% off, your husband is wrong, it's easy), and lost 20 pounds of fat, stopped feeling bloated, stopped having alternating almost-diarrhea and almost-constipation, needed 50% less thyroid medicine, my blood sugar levels went down (they had been a bit high), and I had so much more energy and focus, it was amazing!

I hadn't even KNOWN that I had other issues!

Oh, and my finger joints stopped hurting.

There are a ton of serious autoimmune disorders associated with celiac:

Hashimoto's thyroiditis

Graves' disease

Diabetes

Lupus

MS

Rheumatoid Arthritis

Fibromyalgia

and more. Many of us believe that celiac is not just associated with these disorders, but that the continued eating of gluten causes them. They're sort like having advanced celiac, but instead of the immune system attacking the intestines, it attacks other things like thyroid, joints, pancreas, nerve pathways, etc.

People with DH see their immune system attacking their skin---and they often have no noticeable stomach symptoms, and it's caused by eating GLUTEN.

There are already studies showing that eating even a tiny bit of gluten (like a crumb) occasionally causes significant damage in celiacs.

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Wow, you all have given me a lot to think about. And, from another section of this forum I did find a good doctor in my area (a doctor at Penn Radnor near Philadelphia) that I could go to.

One last question if you don't mind. Is there a good on-line list of non-gluten foods ? What do you use to guide your eating?

Thank so much for all of your support and guidance. It has really been so wonderful to be able to talk with you all!!

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Since you mentioned an argument with your husband over Celiacs and basically how strict you have to be on this diet, I would say absolutely get a diagnosis. At minimum use EnteroLabs for testing. Your husband sounds like he might NEED you to have a diagnosis. It is a way of being sure that all this effort to keep you healthy is really doing something and is worth the effort. This is a disease that is managed only by diet. But if you are a celiac, once you go gluten-free, your reactions to gluten will be worse. There are long term problems for not adhering to the diet. So once your body heals, cheating is not much fun -hours in the bathroom, all sorts of initial reactions, followed by the brain fog, moods, etc. You may cheat willingly once, but usually one bad reaction is all it takes to make you think twice about cheating on this diet.

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I would recommend getting a blood test first, which is simple. If it comes out negative for Celiac, it's up to you whether to go further with more tests, or just go gluten free because it feels right to you. As far as Enterolab, they cannot diagnose celiac disease, but the majority of people's results seem to be positive for gluten intolerance.


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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I am one of the people that is hesitant to advie a biopsy, which I consider invasive & dangerous... & you could still be gluten intolerant & have a negative biopsy, so the only thing that accomplishes is that the doctor & the hospital made some money, you missed a day of work or so & you are right back where you started. I advise to get tested at Enterolab.com They are accurate & you can get the full gene test - gluten intolerant genes & celiac genes & it does not go on your medical record.

re long term effects, did you mention how old you are? It gets worse the older you get...

my mother, undiagnosed but we are all double DQ1, so she had at least one DQ1 (probably had 2) & she died of colon cancer. It takes 5 years gluten-free for your % of cancer to return to the lower % of the average population... I can tell you that I know some people that have had problems & did not go gluten-free & they have cancer. one example a 35 YO woman with 3 kids, her mother biopsy dxd celiac & her sister dxd celiac & they were begging her to go gluten-free for years, all three of her kids have symptoms, she does not let them eat or drink after a certain hour, so they do not have accidents during the night... well, she has thyroid cancer & had surgery & chemo etc. She is still not on the diet. Her cancer will come back... Her mother was very ill with celiac disease & had total villi atrohy & almost died & was on an awful strict diet. Only thanks to her gluten-free daughter who is an RN that got her a specialist & I am sure saved her life...

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I just want to thank you so much for sharing that information with me regarding cancer and the lab that you suggested.

I have heard through the grape vein today that there is a doctor in my town that is good with Celiac diagnoses. So, I might try there first. If I get laughed out of the office then I will go to the lab that you suggested.

Thank you a million times over!!!!!!!

Can anyone suggest a good list of gluten free foods? I am feeling like I don't really know what to avoid.

Thanks so much!!!!!!!!!

gabrielle

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Hello All, I just had to report something to all of you.

I have been gluten free for about 72 hours now.

My bloatedness is gone

My terrible joint aches and pain are 100% gone

My energy level has sky rocketed

and , the best part is that I lost 5lbs in 72 hours. And, it wasn't because I have eaten a lot less either.

I am so grateful that I have begun to feel so much better.

thank you for all of your help. I am going this afternoon to speak to a very good friend in the health care profession who has dealt with Celiac in her practise before. Hopefully she will be able to point me in the right direction.

Thanks again for everything!!!!!!!!!

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Hello All, I just had to report something to all of you.

I have been gluten free for about 72 hours now.

My bloatedness is gone

My terrible joint aches and pain are 100% gone

My energy level has sky rocketed

and , the best part is that I lost 5lbs in 72 hours. And, it wasn't because I have eaten a lot less either.

I am so grateful that I have begun to feel so much better.

thank you for all of your help. I am going this afternoon to speak to a very good friend in the health care profession who has dealt with Celiac in her practise before. Hopefully she will be able to point me in the right direction.

Thanks again for everything!!!!!!!!!

Amazing isn't it. I am glad you are getting prompt relief but do be aware that for many of us here Have ups and downs for a while. Not saying you will for sure have them but don't get discouraged if it does happen. Welcome to the family :)


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Iwould definatley get tested so you know for sure. I am 2 months into the diet and I am feeling amazing, and I can tell if I get a bit of wheat in my system usually pretty quickly now. I have read about all the "ugly" that comes along with unDX Celiac and I am a mother of two young children...I will make sure that I eat healthy and completely gluten-free for my kids...I want to be there for them. I dont want to suffer any longer. Its better to know for sure so that you can make sure that you are doing the right thing for your health, even one small crumb is deadly for us....life is a bit harder but manageable.

Hope this helps.


1 negative Bloodtest.

2 positive Bloodtests.(years later)

Positive Biopsy 08/13/07

Gluten Free since 08/23/07

Jess (31)

Daughter (03/23/04) Negative bloodwork (10/22/07)

Son (09/14/06) Negative bloodwork (10/22/07)

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I have read about all the "ugly" that comes along with unDX Celiac

I am unDX, and have no idea what ugliness you mean--would you mind explaining?

I do know that being diagnosed can be very problematic--insurance companies can use it as an excuse not to insure you, or, at the very least, to raise your rates.

Doctors use it as an excuse to insist on ordering expensive and invasive procedures, not to rule out anything else (although that in itself is not a bad idea if there is reason to suspect anything else), but to CONFIRM celiac.

Dolly would at this point have to go back on gluten--LOTS of gluten--fopr several months before any tests would have valid results. Once you are gluten-free, test results are almost certainly going to be negative.

If Dolly goes back on gluten for several months, that means several months worth of severe pain, discomfort, and lack of energy--and for what? She already knows what the problem was. Why should she inflict it on herself again?

The first rule in medicine is, "First, do no harm."

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I hear both sides of the argument. I am 100% certain that I will not eat gluten again once my test is done.

My friend, who is a chiropractor, can order the tests done for me and we will see. I have only been off of gluten for 72 hours. So, I think if I just eat gluten this week I should be fine for the test. I will probably have the blood work done next week. If it is negative, I don't care because I know the truth now which is that gluten is killing me. I refuse to get the biopsy done. But, since I have been trying to get pregnant with no luck for the last 6 months maybe this is why. And, I feel like I need to know for that reason.

Anyway, thank you so much for all of your advice. I understand that this is a tough disease and brings out a lot of emotion in people. Thanks for caring enough to share your expereinces and advice!!!!!!

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Hello, Dolly

It is possible that "Silent Celiac Disease" is simply a description of the disease before it has been diagnosed. I have suffered with it for years, off and on, probably because I have never been a big fan of pasta, pizza, and bread. Some people have it but never have the symptoms of diarrhea, weight loss and other signs usually associated with celiac. I was diagnosed after a nutritionist suggested "wheat or gluten allergy." Bingo-I realized that my daughter had celiac disease when she was a toddler but I didn't know that adults could get it. So I went off all the gluten that I knew about, and my symptoms improved. I got the ELISA gluten tests about 4 months later and after loading up on cookies, pasta, etc. for a few days I tested at 100 or above on all 3 tests, 30 being a strong positive result.

I never had a biopsy because I felt so much better being gluten-free and I did not want to go back on a gluten diet in order to have the test. If you get tested ask for the ELISA test as it is more sensitive. Check it out on the internet.

At any rate, if you are even gluten sensitive, the only way to go is totally gluten-free. Otherwise, it is possible to develop such ailments as anemia, osteoporosis, thyroid problems, diabetes and even lymphoma, as my doctor informed me today. I have had all of the first three-I no longer have the anemia or osteoporosis but I take thyroid medication.

Read EVERY label-I have found gluten or wheat in things like sour cream for baked potato in Wendy's, the rotisserie chickens at the grocery, sliced ham in the deli. And root beer is brewed with barley, nearly ALL cereals are flavored with barley malt-even rice and corn cereals which celiacs could eat otherwise. A gluten-free diet is not so terrible-just a nuisance at times when eating out. There are rice pastas which are quite acceptable and more gluten-free products are coming out all the time. I just found Stagg's chili makes 5 different chili versions that are gluten free. MY KEYBOARD IS STUCK ON CAPS> SO LONG FOR NOW>

Hello, I am new and confussed. I hope you won't mind helping me.

Over the weekend, I read an article in a magazine called "First For Woman" about Silent Celiac Disease (SCD) which is not as awful as Celiac Disease but has its own set of issues. When I read the article's description of the symptoms it completely described what I was going through. So, I have gone off gluten for the last 2 days and feel remarkably better.

Here are my questions, since SCD is not as terrible as regular Celiac Disease I figure I would just lay off the gluten as well as I could and just leave it at that. But, someone with Celiac Disease told me that was actually a little dangerous. That I must be tested for this. I really don't want to see a doctor for this because SCD is just a little more obscure than Celiac, so why put myself through all of the bother with a doctor who will only scoff at the notion-especially since I got the information from a magazine. What do you think? Is it all that critical that I get tested?

Thanks for your help!!!

Dolly

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Since no one mentioned it yet... if you look at the parent site of this board, celiac.com, you should find a safe ingredients list and a not safe ingredients list. You can print them and take with you to the grocery store, and then just read read read labels. It's a lot of work in the beginning but once you get the hang of label reading it really helps with shopping.

Good luck with the tests!

Pauliina

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