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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Odd Pains
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22 posts in this topic

Anyone out there suffer from odd pains that come and go, tend to be in the same places around the abdominal area and also sporadically around the body. Also having night sweats on and off, tired and sometimes wheezy... and glands seen to pinch sometimes... (Celiac. Been gluten free for 6 weeks)

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Can you be more specific? Is it a general body ache or arthritis like pains? Where in your stomach is the pain? How would you describe the pain, and how often does the pain occur? Any accompanying diarrhea or signs of malnutrition? I have never heard of night sweats being a problem of celiacs, it is not even listed in the University of Chicago's list of 300 symptoms so hopefully other members can chime in on that. It is important to differentiate between night sweats and just getting sweaty under the covers when your room gets too warm at night, if you are actually drenching yourself regardless of the room temperature or removal of blankets then you should see a doctor ASAP. What do you mean by your glands pinching?

Here is a full list according to the University of Chicago.

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

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Thank you for your reply.

It's really hard to explain, but I'll try. Pains in my abdomen come and go, lasting from 3/4 seconds to 20 seconds max. Generally in two places mostly, being in the upper abdomen, and generally hurts in on one side or the other. The pains feel dull and achy.

Then I also have pains that seem to move about, say one in my back for a few seconds , then 5 seconds later there's a pain in my leg. Then 5 minutes later it could be anywhere. It's very strange. The pains are similar to the abdomen pains. Dull and achy.

The night sweats I have had 2/3 times each time for 5 nights and all in the last 6 weeks. I have awoken soaking wet...

The pinching glands (at least I think this is what it is?), is like a sharp stab in my armpit by a pin. This has happened for a few days. although strangely not today.

I have loose bowels but am on iron syrup which I thought could cause this...?

I am very iron deficient, borderline defiency in b12. That's all they tested me for. Though I guess I could be deficient in many other vitamins etc.

Thank you for your reply, appreciate any help.

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It is definitely worth a shot to get the celiac panel. I am only saying this to be absolutely sure and it is VERY unlikely but based on some of those symptoms I would ask the doctor about possible lymphoma, once again extremely unlikely but should be part of the rule out process just to be safe.

How long ago did your symptoms start? Did they happen suddenly or was it all gradual?

Here are the tests you need to get an accurate picture on whether or not you have celiac - Also you have to bea eating gluten for at least a month prior for them to be accurate:

Total serum IgA- This test has nothing to do with celiac, however if you are IgA deficient your IgA class antibodies will likely be false negative and reliance on the IgG type would be needed for an accurate picture.

Deamidated Gliadin IgG - This is a specific test in gluten reactions, particularly useful if you are IgA deficient.

Deamidated Gliadin IgA- Once again, probably the most specific gluten reaction tests for someone who is IgA sufficient

Tissue Transglutaminase ab IgA- This test is a marker of damage in the small intestine but has the potential to be positive for reasons other than celiac

Endomysial ab IgA- A very specific test in your clinical setting, another marker of damage in the small intestine - If this is positive you very likely have celiac.

Please keep us updated and let me know if you have any other questions.

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Thank you for your help. Lymphoma??? Omg.

It's hard to say when things started, I had several bouts of long lasting diarrhea (3-4weeks each time) and bad bloating and gas for a few months. So it's hard to say if these pains started then or whether it's just since have been gluten-free. I wonder if they've been there whilst I had the other symptoms? Or they've started suddenly since being gluten free. Which is what it feels like.

Do I really need to be on gluten for the panel tests? I had one of those tests, I know it came back high for celiac markers.

How would the docs look for lymphoma? Would it show on bloods? Or would I need an endoscopy? which symptoms are lymphoma??

Could these odd pains and sweats be celiac even though I'm gluten free for 6 weeks (I've been very strict)... Sorry for so many questions. It's very worrying. Thanks for your help very much

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I'm quite frightened now, I've just googled a few things. Also it seems as tho morbidity rates during the first 4 years of being diagnoed are high for celiacs.

Wish I could go to doctor today... What should I ask for in terms of lymphoma? :(

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Once again I will stress not to freak out about lymphoma, I am not a doctor, just another internet hypochondriac, the fact that your lymph nodes are painful is a good sign though as cancerous nodes are painless. Diagnosis isn't easy, here is a site http://www.nhlcyberfamily.org/diagnosis.htm

I have no idea where you gathered morbidity rates for celiac in the first 4 years but I can tell you with certainty that the site is extremely wrong. Celiac in itself cannot kill you, it can make you very sick and if left undiagnosed for decades can increase your chances intestinal lymphoma and other gastric malignancies. Once again even that is rare and you would have to be ignoring the most severe symptoms for decades for something like that to happen.

You absolutely need to be gluten free for accurate test results, the awesome thing about celiac is that the damage is completely reversible and the antibodies will diminish upon elimination of gluten, you must be on gluten for at least a month to get accurate results.

Can you post the results of your previous celiac tests? What did the doctor say in response to the positive results? It is not unusual for one to feel worse in the first few months of going gluten free, it is a huge diet change and many on this forum experienced the bad before they saw the good.

Once again, lymphoma is highly unlikely so don't worry, I regret mentioning it, I just thought it would be useful in the rule out process.

I understand the anxiety that comes with not knowing what is causing your symptoms and it is important to know that being anxious will only worsen it, especially any issue in the digestive tract. You have to remain calm and strong during this process, you will make it through and will look back at laugh at how silly your worries were, I am here if you need any support or have further questions. Remember there are 100's of manageable conditions that are much more likely to be the cause of your issue before anything serious can even come into play.

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It's very reassuring to have had you respond in such a way, I am very grateful for all your advice, even if you are (possibly like me) another hypochondriac! You obviously know much more than me, I have almost not been able to research celiac as I have felt too down and depressed about it.

My doctor has referred me for an endoscopy as he thinks I might be bleeding as I have high platelets. But he seemed ok at the fact I'd come off gluten (I have a 5 year old little boy and couldn't have looked after him, I was so very ill). I have noticed a small improvement in my digestion, not so rumble and noisy now! And I don't feel so exhausted as I did... Though I guess taking iron could have improved this as my ferritin was down to 2.4 (I'm also vegetarian). My skin seems better too as to be honest the last few years I have felt as though I have really aged and shrivelled away. Almost like a walking corpse sometimes.

Please don't regret mentioning Lymphona, I must be aware of these things and need to open my eyes to it all. It's just so scary! You are right, I must be strong and calm, at least for my little boy... Though I am not ashamed to admit I could happily have a hissy fit at the mention of cancer.

The morbidity rate that I read of (which is what put me off Internet research with regards to celiacs), was more to do with those recently diagnosed celiacs that within a year to four were also diagnosed with cancer. Or some complication due to malabsorption. Apparently the risk is highest within the those first years. It also stipulayed that celiacs with lymphomas or cancer had very poor prognosis. Which is why I freaked as I have been slowly and unknowingly 'starving' my body these last years and am malnutritioned. I think I have been undiagnosed for perhaps 15 -20 years with the last decade symtoms increasing progressively, and my health very much deteriorating since the birth of my son.

Hopefully I will be able to shake the negativity, and see the light! I do thank you for your support and advice though, it's been a lonely road so far.... And even more 'hopefully' I won't have anything dreadful and these odd pains and night sweats are hormonal....

My motto has always been 'life is a daring adventure or nothing at all'... I must remember this!

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Hopefully it will be a bit less lonely if you come and hang out here :)

Hope you are starting to see a way forward. I had over 20 years undiagnosed and have small kids. It really is getting better for me now.

Wishing you the best for the next stage of the journey

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Well the site you read that from is completely wrong, if you are going to do internet research you have to at least know how to differentiate between credible and non-credible sources. The gluten free market has become huge and there are a lot of shady characters taking advantage of that fact, they make money off scaring you like that, it keeps you coming back and makes you buy their material in hopes to overcome such a "deadly disease". Just think about it for a second, your chances of cancer are worse in the first few years as you find your problem, eliminate the damage from no longer ingesting gluten and your intestines heal? Does that make sense to you? Even the most credible sources have had trouble linking undiagnosed celiac to cancer and the population studies they found were people that made you question why they never saw a doctor about their issues in the first place. There are varying levels of celiac and the damage it creates. If you are ignoring chronic diarrhea and horrible stomach issues for decades than sure it can increase your chances of gastric cancer but it is by a nominal amount so you don't have to worry about that.

Also, to say that someone who had been diagnosed with celiac, went off gluten and then developed cancer years later has a direct link to the celiac itself is rubbish, how can they prove that was not a coincidence? All factual medical studies have shown that once gluten has been stopped and the intestines heal you go back to the exact same risk of gastric cancer as the rest of the population, any site that tries to say otherwise is wrong, period.

I think you should not look up anything celiac related as you seem to stumble into these basement dwelling weirdo's who are trying to scare you, if you have questions come here and ask people who are living with the disease and know what it is like, we have all done a lot of research and our combined knowledge is much stronger than any other silly non medical site you can find.

If you MUST do research on celiac stick to NCBI, and mayo clinic, NCBI will give factual studies and mayo clinic is a non biased medical institution that only provides facts. You can also take a look at the Chicago University Celiac disease centre for more info too. Stay away from WebMd, they conveniently get funded by pharmaceutical companies and present a huge conflict of interest.

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Thanks for your help, I'm sure you are right about it all. And I will definitely stick to this site in future, there's a wealth of information here. And some very lovely people :)

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You could bet your bottom dollar that any post that comes from me is based off medical fact and not just my opinion, I would never share an opinion that I cannot support with medical link, that would be insane and wrong. I always stress the importance of knowing what you spread before you spread it, if I see a member say something on this forum I need my own sources to support it before I will pass the info on myself.

The most reputable sources say that cancer as a result of misdiagnosed celiac is extremely rare, we have members here that had celiac for 40 years undiagnosed and they are fine, the biggest risks involved are development of other autoimmune diseases (all manageable, non deadly) and osteoporosis.

Stay away from the 1 in 100000000 horror stories. I can pull up some on the common cold killing people, Dont ever go outside again, your next cold can be deadly!

http://www.dailymail.co.uk/news/article-1324793/Danielle-Brooker-dies-common-cold-virus-causes-fatal-brain-infection.html

A girl getting a serious brain infection and dying from a regular cold virus, sounds scary doesn't it? They are all over, I have seen some linking the acidity in tomatoes to gastric cancer, these are crazy rarities so for then sake of your sanity stay off that google search!

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Actually laughed out loud when I read your last post, it's so true! It's strange, I would never have seen myself as one to get stressed by such things but since I have been ill I've kind of lost my way. And my memory. And health etc etc.

Thanks for that. I am starting to come here for advice instead of my doctors as they don't seem to know very much at all? In comparison to you guys!!

Thanks again

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This is a tangent, but I am sort of curious to read the study "linking" celiac to cancer if you'd care to link it; depending where/when/why the study was done, it's possible those were "real" results, but correlation =/= causality. Very simplistic example: Everyone in the world who eats gluten will eventually die. Does this mean gluten is poisonous to everyone? No, it means everyone dies.

I sincerely doubt that study, if it was any good, could have linked (early diagnosis of) celiac to such a drastically high rate of cancer in a causal way. If it was "cancer OR complications related to malabsorption," then maybe, depending on how "complications" is defined (ex. "tiredness" could be a complication; "vitamin deficiency" could be a complication; neither is good, but neither is deadly, and either would make sense to have a higher prevalence of after the initial diagnosis, when your body would still be healing and working towards equilibruim).

In general I'd suggest careful interpretation/skepticism of studies you hear about unless you're able to look at the original research; when studies are re-reported, it's usually with some kind of spin, towards some kind of agenda (be it selling products, getting more publicity, getting more funding for a cause, etc.). Even if you can get your hands on original research, a careful, critical read is a good idea before drawing conclusions. An unfortunate amount of medical research is spotty at best.

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Em, I have always had the same thoughts as you, which is what I stated in my post. They have never been able to prove a direct link rather than someone with celiac developing cancer later in life, which is absolutely not fact on whether or not celiac caused it or if it was merely just a coincidence.

Of course, chronic inflammation can increase issues but I am not entirely convinced that there is a direct link myself. As I have said before, they have "linked" the acidity in tomatoes to gastric cancer later in life which has no factual basis in the medical world.

It also comes to play that celiac is a disease of variability, worse in some and not very bad in others (notice the high undiagnosed rate, I doubt those people are all ignoring horrible symptoms). I may be getting a celiac diagnosis with no stomach issues at all, where as many members on this forum would be horribly sick with a touch of gluten in their food.

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Have you ever seen a chiropractor? It really almost sounds like your back and hips could be out of line, which causes neck, back, leg and even chest and abdominal pains. Everything in your body is connected, so being out of place can affect the whole system. It's definitely worth a shot.

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It is possible that parasites could be causing some abdominal pains.

Diana

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As I have said before, they have "linked" the acidity in tomatoes to gastric cancer later in life which has no factual basis in the medical world.

To the OP: if it can comfort you, gastric cancer ranks at the very bottom among deadly cancers in Italy, not exactly a tomato-unfriendly country. If research statistics mean anything, most online pages mean nothing... :)

By the way, toworryornottoworry, I teach research methods to college kids, and I may steal your examples re: vetting sources. ;)

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Thanks for all your responses... Btw, I have seen an osteopath recently who puts me into alignment! I don't think it's that though... Parasites... Oooooo, have no idea about that? Update re pains... They have somewhat diminished, actually disappeared for a few days... And to date I only seem to be having mild twinges and aches here and there. Fingers crossed its just my body rewiring after the shock it's had recently!

(Also, haven't had the time to look for the studies I came across on celiac morbidity, but I will try and find them. They did not belong to any money making scheme, or dubious looking site!.)

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Celiac disease can help along early menopause. I have read so many studied on the connection of reproductive issues and Gluten problems I cried for days. I do not have them saved because it is simply too painful. But do some Googling and if you are female there might be a connection for you. I am not sure if you are female and what your state of life is. For my family we are dying out, I started in early menopause in my early 20's. I lost all my organs at 37. Most of my family on both sides lose their uterus by 24, I most certainly had the same sweats before and after my surgery. I am 3 yrs post op on Dec 28th. with no end in sight of symptoms. As for the pains, for me it seems to be Iron. I am also testing at 15 for Vit - D but treatment did not fix the pains. Iron does. I also once tested low for Potassium so I use Black Strap Molasses as much as I can because it hits them all. Iron,Pot,Mag and Calcium. All you are missing is salt and I suggest non-idioized. I am currently on slow release Iron and the pains have stopped but not the sweats. I hope you feel better.

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http://www.uwgi.org/RubinLectures/celiacsprue_part2/celiacsprue_part2_handout.pdf

Just one of the files I came across when checking out celiac and lymphoma, I'll post any other links as and if I come across them again.

Again, you guys are more 'up' on all of this, but maybe you can see why I thought about the link between celiac and cancer etc

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http://www.uwgi.org/...rt2_handout.pdf

Just one of the files I came across when checking out celiac and lymphoma, I'll post any other links as and if I come across them again.

Again, you guys are more 'up' on all of this, but maybe you can see why I thought about the link between celiac and cancer etc

So that article begins by referring to refractory disease, that is extremely rare to begin with. The only example they have is one person who had refractory disease (where your intestines never heal) and not only that, a severe case. This person then develops lymphoma 29 years later, they have no way to prove that Celiac caused that.

It then goes on to say that 8 percent of Celiac patients get intestinal lymphoma while 1 percent get carcinoma. Do you really believe that 9 percent of the Celiac population is developing cancer? I stopped reading at that point since they were just pulling numbers out of their ass without any backup to the findings.

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