Michi8

As others have said, he was out of line. To suggest tubal ligation as an option is unprofessional and insulting. Not to mention that tubal ligation is a significant procedure that comes with potentially very serious side effects. This doctor needs to be fired by you, and reprimanded by the powers that be.

Michelle

I have the "View New Posts" link, and it will take me to new posts, however it's now going on 15 pages and growing everyday! As well, the board is showing that I've read messages at first, but then revert to unread regardless of whether there have been new posts or not. Seems there's still some bugs to work out!

Michelle

That's crazy that having a nickel allergy could be linked to having Celiac! I'm so glad that someone posted this! I have a nickel allergy, and when I got my ears pierced when I was 14, I ended up having a reaction and the earring became enclosed in my ear lobe and was really gross. I had to have surgery to get it out. When I was 18, I got the side of my bottom lip pierced with nickel (not knowing that I was allergic to it) and I ended up having to take it out after a month (much to my parents' joy!). A couple years later, I found out that I was actually allergic to nickel, which is why I had the infections. I'm glad that I'm not alone in all this craziness that is Celiac and all that relates to it!

I don't know how related it is. It's likely just coincidence. I have tested negative for celiac, as have my kids. Doesn't mean I won't test postive down the road. However, I don't believe I am truly celiac, but gluten intolerant.

Michelle

Hi Michelle, What kind of issues are you dealing with that are thought to be EDS related? There are different subtypes of EDS, some of them with only issues with joints and tendons and others can be serious with organ ruptures (uterus many times in women). There are also hypermobility syndromes that are just that hypermobility without any of the connective tissue issues. That was thought to be what I had until I had a coloscopy and that revealed extensive diverticuli (weak spots and outpouching) throughout my entire large intestine rather than the usual area of the left descending colon.

Most of the pain that I experienced in my joints and muscles actually came from gluten. Also be sure you investigate gluten throughly before you allow your kids to be medicated for anxiety. Anxiety and depression are closely associated with neurotoxicity of gluten in those that are suseptable and medication with standard meds can have unexpected and real nasty results. I almost lost my DD because of those effects.

I've got Classical EDS (I believe it's also considered type III). I do have hyperflexibility in many joints, with a tendency to dislocate shoulders and knees, but I cannot flex my knees or elbows backward. I have occassional joint pain as I get older, seems to be worst during weather/barometric changes. I also have the classic stretchy, velvety soft, transluscent skin. I do have organ issues...hiatal hernia, prolapse, redundant colon along with constipation issues. While I had no issue with uterine rupture (I had two cesarean sections then one natural birth, and everything was fine!), I did have a problem with losing a lot of blood (the technical term escapes me now...my memory isn't so good...right, "hemmorage" is the word!) which was rectified with a shot of oxytocin. In hindsight, I do believe that my babies were malpositioned because of the extensibility of my tissues (easy to flip back and forth from breech) and could have avoided the first cesarean if I was given time to let baby flip back down. I do have many other health issues that could be linked to EDS, but if I wrote them down, this would be way too long. :-)

At any rate, at my genetics appointment we will look at the EDS more closely and hopefully we'll determine from which side of the family it came, and which kids have inherited it. The geneticist has a special interest in EDS, and has done some research of her own.

We will not be using drugs to treat anxiety. I've held the doctors off in the case of my health for many years (I do not take any drugs lightly, and prefer to always treat naturally.) With respect to my daughter's OCD, we were told that we should medicate because she's too old for preschool therapy, and too young for traditional therapy methods. I won't medicate without exhausting all of our other options, and absolutely will not consider drugs unless the OCD is severly impacting her quality of life. At this point, as frustrating and stressful as it is to parent a child with the OCD, we manage quite well with making concessions as appropriate and are having some good success with using a reward system for getting through rituals and completing tasks.

BTW, just keeping on topic...my eldest has been allergic to nickel since birth. Not sure about my other two kids.

Michelle

That is what I was thinking. With the non ana allergies in our household, cooked items do have less of an initial reaction BUT I do believe they still damage the body long term. I think of it this way -- they are more like the sneaky burglar who breaks in when you are sleeping rather than the gun toting bank robber during mid-day. They both steal and do damage but one gets your attention more than the other.

I think it depends on what you are allergic to and how your body responds. To totally eliminate all the foods I'm allergic to, I'd almost be eliminating entire food groups, and the nutrition they provide. I cannnot eat raw tree fruit (have immediate oral reactions, and then GI reaction later), but tolerate them very well when cooked. No GI issues that I have determined. It's when I have gluten, MSG, sulphites or raw fruit that my gut reacts.

Michelle

Along with all my other allergies my nickel allergy has become much less severe. I still would not try wearing costume earring but I don't react to things like my snaps at all any more. All of my allergies have lessened though, some have disappeared totally.

I find the Ehlers link interesting as I am also an Ehlers Danlos person and have even seen some of the worst of my EDS effects subside. I now rarely dislocate when I used to have dislocations of my feet,knees and ankles on a nightly basis. I would have to try and pop stuff back in before my feet hit the ground every morning unless I slept in ace wraps. In my instance a lot of the dislocations seemed to be linked to my edema now that I have no edema I only dislocate maybe once every couple months or so. Makes the EDS much easier to deal with.

That's very interesting to hear. I'm just starting my investigation into EDS...I've got a genetics appointment next month.

Since so many EDSers have IBS/GI issues, and many have autoimmune issues too, I can't help but wonder if there is a direct connection between EDS and gluten intolerance. My kids seem to all have EDS related issues, and I have read that anxiety issues can be linked to the same genes as well...all three of my kids have some degree of anxiety (as do I) with our youngest being diagnosed OCD as well.

I did find that being gluten free helped my moodiness and anxiety...I don't know if it helped my EDS, because I wasn't aware I had it at the time. I am not gluten free right now (long story behind that) but am planning on eliminating gluten again soon...the whole family will be doing an elimination diet. Now I just have to work up the strength to implement it...gotta be prepared for a lot of whining (not just from my kids, but my husband too!) LOL!

Michelle

I have to ask, why is the endoscopy important?

It provides a visual check of how the small intestine looks, and biopsies can be taken to check for villous atrophy. A positive biopsy is considered the "gold standard" for diagnosing celiac disease. However a positive blood test should be enough for diagnosis, as should dietary response.

Michelle

It could mean that you are dealing with an allergy as opposed to celiac or gluten intolerance. Malt could be made with barley, since you are reacting to malt it could mean you are allergic to barley rather than intolerant to gluten. A person can certainly be allergic to wheat as opposed to intolerant to gluten as well. You could do a full elimination diet to narrow down what foods are a problem for you.

Personally, I find, with my allergies, that many offending foods are easily tolerated once cooked. Gluten isn't that way though.

Michelle

Nickel in foods? Michelle, if you could post your list I'd be very grateful. Thanks in advance....

Nevermind, I used the wonders of Google to get a list. Thanks for pointing it out though, I never would have thought....

I'm glad you found it via Google, because the list is quite long and complicated. If you still need it though, I could scan it and post the copy.

Michelle

Michelle, what is EDS?

Ehlers Danlos Syndrome. It's a genetic connective tissue disorder, which affects all tissues in the body.

Are chromium and cobalt in many foods/beverages? I think that chromium is in vitamins, right?

I read recently that people who are allergic to nickel shouldn't wear mineral-based makeup, so I've eliminated that. The article (sorry, can't remember where I read it) said that continuing to wear mineral makeup could make people allergic to more metals. Yikes! I really like wearing my gold rings, and would hate to have to stop.

Cobalt is what vitamin B12 is. It is also found in metals and pigments. Chromium is in metals, glues, resins, inks/pigments, ceramics, cement, perservatives, etc. Tatoos are a no-no when someone has either cobalt or chromium allergy...could cause a pretty bad reaction. Both cobalt and chromium are found in many makeups, especially mascara and eyeshadow. Nickel can be found in many different foods (I've a long list of foods that may need to be avoided), and can affect tap water too.

Michelle

I'm surprised she's not suggesting both an colonoscopy and a gastroscopy (endo), because there is value in checking the colon too...especially if she's trying to rule out any other potential health issues related to the GI tract. But to not suggest gastroscopy at all makes no sense!

If you're having good sucess with the diet, then you're right that there is no reason to do either procedure.

Michelle

I know Sunnydyrain has this too. But I never connected it with celiac or even thought that it could be connected.

Anyone else with a nickel allergy?

I have allergies to nickel, chromium and cobalt. Don't have a positive celiac diagnosis...but I do believe I'm gluten intolerant. Also have EDS, which is connected to skin sensitivity.

Michelle

I agree. She's now on a steriod cream as well as oral steroids which will only last a few more days. I thought about not doing it and getting her tested but that seemed pointless because if I take her off gluten and she gets better than I know what it is. So for now no testing her rash is a little better hopefully with time it the rash will heal and she won't have scarse.

There is a big possibilty that her vaccine was the main trigger. She had just one spot before her shots and after that it began to spread. Wow I never would have thought of that. I hope other mom;s read this and see if there is some way to protect there kids.

A vaccine could be a trigger. However, my daughter has chronic eczema (and OCD) and she's never had a vaccine in her life. I do, however, think that her health issues are diet related, and will be trying an elimination diet, including removing gluten.

If dietary changes help, then you have your answer.

Michelle

From the description of the rash, it does sound like psoriasis. From what I understand, psoriasis is hypothesized to be autoimmune, and can be connected to celiac. Whether they are celiac or not, some sufferers do find that being gluten free helps their rash.

Michelle

We started with avacado, but applesauce, butternut squash, sweet potato are all good first foods and low on the allergy list.

Apples actually are quite high on the allergy list, as are carrots and peas (the allergenicity does change somewhat with cooking...carrots drop in allergenicity dramatically when cooked.) I usually post a link to the Jojena Food Allergy Scale for reference, but it appears the link is not working right now. This is the link, in case it starts working again:

Open Original Shared Link

Michelle

For me, the only folders that are showing up as unread are the hot topics. Everything else has been greyed out, whether I've read them or not.

It is showing up this way in both Safari and Firefox.

Michelle

Yes, I have OAS. It's related to my severe birch pollen allergy, and has gotten worse over the last 10 years. I cannot eat any raw tree fruit (apples, peaches, pears, plums, cherries, etc) or nuts (almonds & hazelnuts/filberts) but can eat them cooked (cooking changes the protein). I've seen lists of possible cross-reactive foods...apparently wheat can be a problem for birch pollen cross-reaction as well.

It's frustrating to be allergic to such basic foods. When people hear I can't just bite into an apple, they're pretty disbelieving. Sometimes I can't resist having a fresh apple and I pay for it later...first with the mouth and throat reactions, and then later in my gut. At least my peanut allergy became less severe. So now I can eat peanuts without problem...though I seem to still have a reaction depending on how the peanuts are prepared (probably a cooked vs. raw issue with peanuts too.)

Michelle

thanks for that... i'll check. although those links are not for my province but it might give me some ideas.

yes, it can be frustrating as my child is not disabled or anything, but needs the kind of care that i think only a parent one on one can provide... and he struggles each day to gain an ounce so even an occasional exposure to gluten could be disastrous.

now if only you could have the enterolab done here in canada.

AFAIK, you can use Enterolab for testing. I believe there are a few Canadian members who have used them.

Michelle

The timing of introducing foods is up to you. Waiting until 6 months is the current guideline, especially for breastfed babies, but there is nothing wrong with waiting until later either. You may want to choose fruit or veggies for first foods, as grains are very hard on the digestive system...with a risk of celiac I'd be especially mindful, and hold off on all grains until later on. Foods at this age are really for introduction and exploration...breastmilk should still be a primary source of nutrition for the full first year.

Michelle

I should add...I had chiropractic adjustments throughout my third pregnancy, which helped a lot with the pain. If you go that route, find a chiropractor who is trained to work with pregnant patients. There are special techniques that help with alignment of the pelvis and encourages the baby to settle in a good position. There is also the Webster Technique which is very good for helping turn a breech baby...it's very gentle, and is not risky like an external version is.

Michelle

i am 25 weeks pregnant. my hips have really been bothering me. i brought this up with my dr last time nd he said it is a normal pregnancy issue. i know it is but my hip really hurts! it hurts on the left sid and in the front pelivc side. it is to the point where i cant roll in bed, i have to sit straight up then slowy move my body into another postition. i have two children already and had minor pregnancy complaints with them. my dr said it gets worse with every baby. i asked if it could be my celiac, but he doesnt think that a food allergy can cause joint problems. my hands have also been cramping up, and my fingers have to be rubbed out just to work again. im getting worried that there is some vitamin im lacking or something. im really strick with my gluten-free diet, so is it possible that im still lacking something or that my body is not working right?

It really could be any number of things, but pregnancy is likely contributing to it. I had horrible hip, pelvic and back pain during my third pregnancy. I have since found out that I have Ehlers Danlos Syndrome, which has a huge impact on all the tissues of the body, especially joints. It was likely EDS that was the issue, and pregnancy hormones and the baby's position made it worse.

Michelle

Thanks everyone! I didn't want to buy a whole bag of flax when I only needed about 1/4 cup. I've never used it before, and didn't want the rest of it to go to waste. Although, maybe it's time for some experimenting.

When you use flax seed meal in a recipe, you need to adjust the amount of oil/butter that is used. It can also be used for egg replacement. This is the info I found on it:

Substitutions in Recipes

For Fat

mullberrymom,

If your daughter is still having trouble following the diet, and sneaking foods may be negatively impacting her bowel and psychological health, then perhaps you need to remove the gluten items from your home rather than just keeping them locked up.

Michelle

Sorry about that, just learning. Our daughter has celiac and sounds very similar. When she was younger until age three she had "chronic diahrea" then when we were toilet training she changed to constipation type symptoms. Finally in 1st grade after we had tried many things and been on laxatives for 2 years we took her to Mayo Clinic and she was diagnosed with Celiac Disease. (She is adopted and has many other special needs as well.) Since then she has been on and off Miralax (mostly on). She is now 13 years old and still struggles with soiling and figuring out how her body works when she needs to have a BM. She is fianlly doing better as she is taking miralax, dulcalax and stool softners. She is also finally really following her diet. She has ADHD and is Bipolar and would sneak food. We have all gluten products locked up in a special cabinet and even in our frig. Her ADHD is finally now under control also. But back to the orginal thing about Miralax it has been a good thing for our daughter. We have been a long road with her not being able to "get to the toilet" and knowing when she had to go. Let me know if you have more questions about anything. The miralax she takes is because she has celiac and hasn't followed her diet very well, even if she had I think she would still have needed it over these past years.

My 9 year old son is on Miralax because of chronic constipation. He has tested negative for celiac at this point. He has always had very infrequent, large bowel movements, even when he was breastfeeding. When he was older and toilet trained, he struggled with bowel movements and would scream in pain. His stool was always very large (more than adult-sized at 5 years old!) and very solid (and very hard to flush.) It was when this constipation lead to stool and bladder incontinence that we finally got the help he needed. Turns out that his bowel was extremely distended with stool, and his body had a hard time passing it. He has now been on Miralax for over a year to give his bowel the chance to return to normal size.

Since then, I've been diagosed with Ehlers Danlos Syndrome (EDS) which is likely responsible for my health issues, including constipation (though never as serious as my son has experienced.) Since this is a genetic disorder, I suspect that it may be the cause of my son's constipation as well. Those with EDS often have diagnoses of IBS, Chronic Fatigue, Arthritis, etc. Some have some relief with a gluten free diet (as I have as well.)

Michelle

One other thing that can help hair growth although it seems odd is good circulation. The medication I was on made me lose hair because it affected my circulation which was one of the side effects, but it took some researching to figure out that poor circulation can actually cause hair loss.

That's interesting to hear. I wonder if that is what is at issue for me, and whether it is related to EDS. I have some issue with circulation (cold extremities, feel cold all the time, sometimes feel dizzy or like I'm going to faint.)

Michelle