Michi8

Hello all, I am new here and I possibly think I might have celiac. I am being tested at the doctor tomorrow, but I have a quick question. Is joint pain associated with celiac? The reason I am asking is that I have extreme joint pain, my shoulders, hips and knees. Last night my husband and I went to a movie and I guess because I was sitting in one spot for so long I could hardly walk afterwards. We had to wait until the theater cleared out so he could help me down the stairs and it took me almost 20 minutes to get to the car. Any advice will help.

Thanks,

Kim

Yes, it can be associated with celiac. It can also be associated with a whole host of other health issues. My joint pain has been attributed to Ehlers Danlos Syndrome (EDS) which is a connective tissue disorder. I am treating it with high doses of Vitamin C, which is supposed to help with connective tissue health.

Michelle

Hi:

Yes, I understand that it is too late for a celiac disease diagnosis, but can’t a doctor help out on determining other food allergies or intolerances?

And let me pose this question. Can you, or anyone else on this board tell me this isn’t a sign of something more serious? Could it be cancer, liver issues or I don’t know what else?

I mean I’m “pretty sure” I have celiac and part of that “pretty sure” is based on my sister’s experiences, but she doesn’t have an official diagnosis either.

When I go to the doctor, I’m going to say what I think it might be, but I’m also going to ask if it could be something else.

And as far as Entrolab goes, I part of me really wants to do it, but frankly I spent an hour researching them tonight, and I can’t find a single bit of independent back-up that it is legit…. Most of the positive information I saw was clearly written by the company. I did see some positive user-submitted comments, but for all I know, people who work for Entrolab could have written some of those. (I worked in the internet marketing industry briefly, and I know that’s a common practice…)

Just from an cost point of view, Entrolab is $250 for a celiac test, minimum out of my pocket (And I’d want to be tested for soy and casein and that’s another $100 for each test)… Compare that to going to this doctor, $40 for the visit… From I can get a list of the tests a doctor recommends… Not sure how much those tests will be, but will be discounted… At the very least, I can get a list of the suggested tests, see how much they cost, and decide what to do from there…

I just think I need options…. I know if I had insurance, the first thing I would have done when I thought I had celiac disease (and later with these allergies) would have been to call a doctor. I am just looking for an affordable way to do that now.

Rather than going for testing at this point, I would continue to work with dietary changes to improve your health. An elimination diet, though difficult and time consuming, would really be a good way to go...and would probably give you some clearer answers. You mentioned the possibility of lactose intolerance. Try eliminating dairy for a minimum of 10 days (I think a few weeks is better though), and then reintroducing. We did this with my entire family and came away with the clear answer that there is no dairy allergy, but my son does have lactose intolerance. Now we "treat" it with avoidance and lactaid, and his daily tummy aches have disappeared. This webpage is a good resource for going Dairy Free: Open Original Shared Link

When it comes to allergy and intolerance testing, it's really hit and miss. The tests just aren't that accurate (for example, my daughter's pecan test came back negative, but it is the nut she most strongly reacts to!), and, quite frankly, the medical community still doesn't know that much about how allergies work anyhow. I don't think that allergy testing would be worth the cost without insurance. An elimination diet would be more effective.

Aside from the allergies I've known about and dealt with all my life, I've been through the whole testing gamut, and my tests still say everything is "normal." I've simply come away with diagnoses of IBS, CFS and EDS. And the EDS diagnosis may just haunt me down the road if Canadian healthcare becomes privatized, as it could be considered a preexisting condition, limiting the kind of coverage I get, and raising the premiums. That said, there is still something really amiss with my health and I continue to do testing to find out why I am experiencing the symptoms I have.

Do consider that getting any kind of diagnosis may make getting your own insurance difficult down the road. If elimination diet doesn't help, then maybe consider further investigation with a doctor's help. Or reconsider Enterolab, as it may just give you a better picture of what's going on than what the standard lab test will.

Michelle

P.S. When I was writing my "food journal," I noticed my margarine had "soy" listed in the ingredients three times

Pele:

I am going to research this more in a few hours, so this will be one of my last

Hi everyone, I'm new. DH was diagnosed with celiac disease about a month ago and since going on a gluten-free diet has done very well. He has not gotten sick once since then, which is such a huge improvement! I'm grateful that we've finally figured out what the problem is. My concern is that he's not taking responsibility of managing this disease. For example, we bought two books, and who read them both? Me. He hasn't even looked at either of them. He still doesn't really know which foods are gluten-free and which aren't and will often ask me "can I eat this?" When we go out to eat he absolutely refuses to ask for a gluten-free menu or tell the server he has celiac disease. He'll look up gluten-free menus online ahead of time (if I remind him) to see what he can order but that's about it. The only thing he's done is research and buy gluten-free beer. I have no problem helping him, but I don't think I should be fully responsible for managing this. He needs to take some responsibility. Is this type of thing common? I didn't know if it was a form of denial, or what. I know it has to be a huge adjustment. Thanks for any advice.

My husband does this with everything...I think it's common husband behaviour...like with refusing to consult a map, or ask for directions. There's no way he's going to research health issues. And if his order is wrong at a restaurant, he couldn't be bothered to go through the hassle of having it corrected.

That said, at least yours got a diagnosis and is seeing positive results. Perhaps, over time, reminders and repetition will drum the dos and don'ts into his head. I can't even get my husband to go to the Dr for a check up....there's no way he'll get tested for celiac on top of that (and I really think he needs to get tested!) I'm afraid it's going to take a really scary health issue to get him into the doctor's office.

Michelle

Sorry guys....I dont mean to be a BIG PAIN in the A** but I have posted some questions.

Painful stomache aches right before BM....the needing to go right then and there. I thought this was normal?

After reading....I guess its not.

I have nobody to talk to about these issues. Please bare with me..

Thank you guys!

No, that's not a "normal" sensation. That's the type of feeling I get due to lactose intolerance. Other foods trigger it too...I suspect I may also have an issue with fructose.

Michelle

The doctor who told me 3 times a day explained that if we eat three times a day our body does not put a hold on the meals and process all at once. It processes as it comes in. The sooner it goes out the less time our bodies have to reabsorb the toxins.

I would expect the flip side to that would be, the faster our body moves food/waste through our bodies, the less time we have to absorb nutrients as well.

Michelle

I think normal is different for each person depending on eating habits. I had a doctor tell me to try for three a day. The idea was to have one for each time you ate instead of waiting to have one movement a day.

There is some variation of "normal", but I believe 3 per day, everyday, is probably excessive. The body doesn't process food quickly enough to have a movement for each meal. AFAIK, one a day would be ideal, but it can be very normal to skip a day too. My son, OTOH, would go days in between. That was not healthy for him at all.

Michelle

Edit: After a quick google search, apparently 3 times per day can be normal for some...the rule of thumb appears to be anywhere from 3 per day to 3 per week.

This has been the GI issue my son has dealt with since toddlerhood (he is now 11yo). Essentially the stool moves very slowly, and the bowel stretches out rather than moving the stool along. When the stool is finally eliminated, it is very large, dry and clogs the toilet...and is very painful to pass. For my son, the celiac panel came back negative, and other tests showed no other health issues. So, for the last 3 years we've given a daily dose of PEG 3350 (MiraLAX in the US) which pulls water into the bowels to soften the stool and make it easier to pass. Doing this has given his body a chance to shrink the stretched bowel back down to normal size. It's not habit-forming, but he returns to being "backed-up" fairly easily if we go without the PEG a day or two. Adding fibre to the diet, BTW, would make this GI issues worse...more bulk would just stretch the bowel out more. I suspect the stretchy bowel may be an Ehlers Danlos Syndrome issue (connective tissue disorder), as EDS is genetic and I've was diagnosed last year (with different symptoms than my son.)

We have figured out too, that he is lactose intolerant. Taking lactaid helped significantly with the frequent upset tummy problems. These issues may very well be due to gluten-intolerance or celiac, but the pediatrician won't entertain testing again at this point. So we'll just watch carefully...and may try the gluten free diet again this summer to see if it helps.

Michelle

Just wondering if anyone who has been to the Celiac Center in NYC has had an easy time rescheduling an appointment with Dr. Green? I am supposed to see Dr. Green for the first time on Wed. and when I got home from work today there was a message on my answering machine that they have to reschedule! I am so upset about this- I've waited 3 months for this appointment. And I am starting a new job in two weeks so I won't be able to take any days off for three more months. I am just wondering how often this happens? I know doctor's schedules change (I am a nurse practitioner) but it is so frustrating after waiting so long for the appointment. I am keeping my fingers crossed that maybe they will be able to fit me in one day next week (I have a few days off before starting my new job). Well I just needed to vent my frustrations- I have been waiting for this appointment for so long! Thanks for listening.

Jen

Happens often with all sorts of Drs. How's about a positive spin: at least they aren't rescheduling an colonoscopy after you've already done the prep! (Almost happened to me...my GI doc cancelled all appointments only a couple of days before I had to start drinking that awful solution...had to wait another few months for the rescheduled time.)

Just a thought on potential allergies...

Spring is a really bad time for pollen allergies. My eyes suffer terribly for the entire month of May, when the birch pollen flies around here. They are incredibly itchy and red, and if I rub them too much, I end up with horrible conjunctivitis. Reactine (Zyrtec in the US) does a pretty good job at keeping the reactions to a minimum. In addition, we keep all the windows closed in the house and I try to spend as little time outside as possible (that's really tough because May can be a really warm, sometimes hot, month...and it's the first of the good spring weather...I want to be outside to enjoy it after being cooped up all winter!!!) I have tried allergy eye drops, but any drops sting horribly when applied. Now that we're in to June, the birch allergy reaction has subsided.

At any rate, allergies may be something worth considering...not as the cause of dry eyes, but as a potential irritant on top of the dryness.

Michelle

You wouldn't become sensitive/intolerant to something if you weren't already predisposed to it. If you have a tendency to allergies, the allergy may be kept at bay with constant exposure (animal dander for example), once the constant exposure ends, the next exposure could cause a reaction. This happened with my dog allergy...had a dog growing up, and never reacted until she was gone and I was exposed to another dog.

I am actually seeing a worsening of my birch pollen allergies. My theory is that I am only exposed to that allergen for one month (or so) in the spring. Each year is like a new exposure, and each year I suffer more than the year before.

Michelle

I have always hated vegetables - to me they just plain taste bad. But I force myself to eat them because they are good for me. I prefer to drown their taste in butter, cheese, sour cream, or some other fattening substance that I do like. My salads are full of meat, cheese, eggs, nuts, and anything interesting to overcome the lettuce and veggies. There are a lot of creative cooks here - what do you suggest for making veggies taste better?

I think stir-frying is a really good, tasty way to prepare veggies. You can experiment with different sauces to suit your tastes. Others mentioned spinach as well. I think baby spinach makes a wonderful salad...add small pieces of broccoli, red peppers, strawberries, dried cranberries and toasted almonds and toss with a sweet poppyseed dressing...yum!

Michelle

(who enjoys lightly steamed veggies more than raw...steaming brings out the sweet, and tones down the bitter.)

I have silent celiac disease. Can eat gluten without any symptoms. I am still being encouraged to eat a gluten free diet due to, among other things, the increased risk for cancer. Then this article appears.

No Higher Cancer Risk for Silent Celiac Disease

https://www.celiac.com/articles/21818/1/No-...ease/Page1.html

My thyroid is fine, had a bone scan recently - no issues. It makes no sense to feel so good and be told to be on such a difficult diet. Not to mention the fact that I am not supposed to take Holy Communion at church. Any ideas anyone? Thank you.

You've had a biopsy showing villous atrophy. If you continue to eat gluten (including communion wafers) that atrophy will get worse, and at some point you'll probably start seeing symptoms due to malabsorption. It is fantastic that it's been caught before you're symptomatic, because that means you've got a great chance at staying in top physical shape. It's much harder to reverse damage, and the resulting health problems, when the disease has been going on for longer. There are some who never do completely heal.

And there are some who continue with health problems with no clear test results, such as myself. To know that eating gluten makes you feel poorly, but the tests show you're "normal and healthy" makes it tougher to take on the diet. At least you have the proof of the necessity for being gluten free.

Michelle

Ugh. My mom mainly. MIL somewhat.

My son is 8.5 mos now. He eats at least 2 solid meals a day now, and is still BF. I kind of figured he'd be weaned by now, and my hubby is ready for him to be weaned... but I'm not.

Anyways, our extended family is always wanting to give him stuff: the gerber puffs, cake, etc.

No matter how many times I tell them "YES A CRUMB WILL HURT HIM" they think I'm over-reacting. And they've even seen my husband's DH! They know what gluten can do, but they think since my son doesn't react the same way that he'll be ok.

How does everyone else deal with this? Do I just not let them watch him? I don't want to be that mean, but geesh - he is MY son!

You could take the stance that others cannot feed your son food that he has not been properly introduced to. After all, he's only 8.5 months old! Breast milk (or formula if one doesn't breastfeed) should still be his primary source of nutrition at this point...at 8.5 months, solids don't provide enough variety and nutrition for proper growth.

BTW, keep breastfeeding as long is best for you and baby...hubby shouldn't really have anything to say about it. BTW, I breastfed all three of my kids between 2 and 2.5 years, and I firmly believe it was the best for my kids' development (though I was pretty tired of it by the end.)

Michelle

It's not available to Canadians yet...don't know how long we'll be waiting. For those in the US who haven't found them yet, try asking your store manager to bring them in.

Michelle

I haven't tried it b/c of my many fillings but my dd (20) did it for almost a month and her teeth are alot whiter! She used the sesame oil and could only swish for 5-10 minutes...still worked.

Michi8, its not so expensive...just a bottle of oil and if you change your mind you can use it to cook with.

I know that this particular practice wouldn't be expensive. In terms of cost, I was alluding to scams like ionic cleansing, ear candling, ionic foot pads, etc.

I still don't buy the detox part of it. I think I will try it in the form of oil supplements, and using certain oils (I'm most interested in using coconut oil) for cooking...and I may try it sublingually. Don't think I'm going to bother swishing.

Michelle

I have been reading up on OP, and considering trying it, since hearing that it can be helpful for keratosis pilaris. However, the skeptic in me is having a very hard time believing that this process can detoxify the body...it just does not seem scientifically plausible. I, quite frankly, don't believe that any of the so-called detox therapies do more than empty your wallet.

I do wonder if what is really happening, for those who see benefits, is that nutrients from the oil(s) are being absorbed sublingually. After all, swishing oil for 20 minutes should keep it in contact with the mucous membranes long enough to see some absorption. And, if that's the case, would simply applying drops of oil under the tongue for a period of time convey as much benefit?

Michelle

Thanks for doubting me. Maybe you can chat with my dermatologist who performed the patch tests that confirmed the allergy. :-P The body will take B12 from natural sources, and that is what I count on. It is the supplementation that is at risk. Yes, I am allergic to cobalt...which is what cobalamin supplements are made of. I am also allergic to nickel and chromium, which are also mentioned below (from Open Original Shared Link

"While estimated to be rare, dermal exposure to cobalt can - like with nickel sensitivity - trigger allergic

reactions, dermatitis and asthma, whereby hypersensitivity to nickel becomes a heightened risk factor

for cobalt hypersensitivity. Home or work-related contact sources of cobalt are pottery, paints, some

cosmetics, costume jewelry, antiperspirants, hair dyes, dental plates, etc., and also Vitamin B12 in the

form of injections (which can cause a red, itchy and tender area around the injection site) and tablets

(which can trigger eczema-like dermatitis).

In addition to nickel and cobalt, chromium is another metal whose exposure may trigger an allergic

reaction in some hypersensitive individuals, necessitating the use of gloves when handling any suspect

metals, or applying a protective coat of varnish (or clear nail polish) on items one has to touch and use."

And FYI, there is risk of having anaphylactic reactions to injections B12 in allergic people.

Well, since B12 is a vital, necessary nutrient, I have my doubts that anyone would be allergic to it, or any other essential nutrient for that matter. The liver normally processes B12 from food into methylcobalamin (though not all of it). I'd have to believe that anyone allergic to it would have serious problems (or die) even before being born.

From Open Original Shared Link:

I suspect that your reaction may be to a specific form of cobalt, but the basic element itself seems to be quite essential.

Vitamin B12 itself won't do that, so it must have been one of the other ingredients.

It is certainly possible to react to vitamin B12, though I don't know if it would cause stomach cramps specifically...would depend on how your body reacts to allergy and intolerance. I am allergic to cobalt so would likely react to vitamin B12 supplements. I avoid taking them...but my levels are fine at this point...don't know what I would do if I needed to supplement!

Michelle

Biocard has its limitations. If you are IgA deficient, then a negative result on the Biocard test would be inconclusive. Best to have the full celiac panel run by a lab.

Michelle

Fatigue can certainly be a symptom of allergies...especially if you are constantly exposed to your trigger allergens. I am allergic to cats (always have been) and when I had one in the house (when I was a young adult, still living with my parents), I was always sick (stuffed up...my sinuses were constantly draining) and absolutely bone-dead exhausted. So much for the "theory" that you can get used to living with animal dander. I had to move out to get relief.

In terms of allergies to almonds & peanuts, it is possible that you may be experiencing allergic symptoms, and they may be different depending on how these foods are prepared. I am allergic to all sorts of food (oral allergy syndrome related to birch pollen allergy), including almonds and peanuts, but only get "hives" or an oral reaction when these foods are raw. Cooking changes the proteins, making these foods supposedly safe for me to eat, and so I can eat peanuts and almonds without obvious oral reactions when they have been roasted. That said, I'm not convinced that I don't have other, more subtle, reactions in my body to these foods regardless of how they are prepared.

Michelle

Well I haven't found anything as far as as allergies causing fatigue. Most cause hives/skin problems/ etc., but I don't suffer from any of that. Mine is a straight up "coma" feeling, like the poster above me described.

I also want to know what exactly in these foods is causing the reaction so I know just what I have to avoid. And every once in a while I convince myself that it's in my head, and that there's no possible way these foods are causing me that much difficulty so ...I try them again.

Just an FYI... patch testing is different from scratch/skin prick testing. Many samples of allergens (typically different items than for food testing...such as metals, chemical ingredients, etc) are placed on your back (can range from 25 samples to over 100), covered up and left for a couple of days. They are then checked, recovered and left for another day or two. Not being able to bathe your back for a few days isn't fun, but the test can reveal some good information.

Michelle

I had patch testing done through my dermatologist. Found out that I'm allergic to potassium dichloride (chromium), nickel, cobalt...which are found in many products such as adhesives, cosmetics & hair/body products, paints, cements, etc. Also allergic to neomycin.

Michelle

I had patch testing done through my dermatologist. Found out that I'm allergic to potassium dichloride (chromium), nickel, cobalt...which are found in many products such as adhesives, cosmetics & hair/body products, paints, cements, etc. Also allergic to neomycin.

Michelle

For those of you with Chemical Sensitivities how did you narrow it down to a specific chemical or additive? Is There some sort of testing for this or is it learned through trial and error???

Thanks!!!

Everyone has given you such good responses so far. Something I haven't seen mentioned is getting your son tested. Since he has been diagnosed with Grave's Disease, you may want to investigate if Celiac Disease may be the cause of it, as untreated celiac disease can lead to many other auto immune health issues, including thyroid.

Michelle