Michi8

Allergy testing is hit or miss for accuracy. Your best bet is to do a thorough elmination diet.

Michelle

Oh my goodness you are too funny!! I have thought the same exact thing lol!! I even bought a rice crust pizza once (BLA GAG ME) I paid over $8 for the thing and it was so bad that I couldn't even get one bite down. I even added extra cheese and pepperoni, but it was still the most discusting thing I had tasted in a long time. I just can't afford to spend over $8 to take a chance that it will taste like cow crap (not that I know what that tastes like, but I'd guess it may taste better then that pizza did EW)!! I keep saying they need to have people in the health food stores with samples of gluten free foods like they do in the normal grocery store. Then NO ONE would have to waste money to buy it lol!! All kidding aside though I'm sure there are some good gluten free products out there. It just depends on how much you are willing to waste trying to find them lol!! Good luck and I hope we all find some awesome gluten free products soon!!

Have you considered contacting the company(s) about getting samples, or maybe coupons towards trying their products? That way you wouldn't be (too) out of pocket if a product isn't to your liking.

Michelle

My partner prefers short hair. Every time I contemplate growing it out, he balks. that isn't the only reason I don't grow it out -- it's also bloody hard. Know this, if you cut it REALLY short, as in with layers and such or as in with clippers, it is insanely hard to grow it out. However, it is REALLY easy to take care of short hair. I just get my hair wet and then squish it around this way and that with some hair product. However, you know how when you sleep on long hair you CAN get up and go...not so with short hair. When you sleep on it it does all sorts of weird stuff and you wake up looking pretty silly. At least I usually do. That's super short, though, not shoulder length or something.

My hair looks pretty goofy the next morning if I wash & dry it before going to bed. However, it only takes a minute at most to wet it, redry and put in hair product (my hair stands straight up if I dont' use product.) If I'm too lazy to fix it, then it's a ball cap day. I still prefer that to pulling it back into a headache-inducing ponytail.

Michelle

I wear my hair the way I like it. I tend to cut it short for a while, then grow it out really long, then cut it short again. Though I find long hair is a lot of work...and typically end up putting it up in a pony tail. Right now I've cut it very short and have been keeping it this way for a couple of years. I love the ease of caring for short hair and it suits me.

Michelle

All true; however, I am now convinced that, while there is definitely a genetic component to celiac, especially when it appears in an infant, gluten intolerance combined with continued gluten ingestion DOES lead to celiac (if you define celiac as changes to the villi).

And as an adult, you can be as "healthy as a horse" one day, and suddenly develop an autoimmune condition the next--look how many of us this has happened to!

One certainly won't develop celiac if they never ingest gluten. That's the same with allergies...you cannot become allergic to something you aren't exposed to.

I don't know about autoimmune conditions coming on suddenly, though. I think it's a gradual process that isn't noticed until symptoms are impossible to ignore or brush off as "normal."

Michelle

Happy Birthday!

Just to add a insy wincy bit of fuel to the fire: I don't know that this ISN'T the forum to discuss personal issues like faith or belief...I mean, if we're free here to discus the most disgusting of body functions, why not something beautiful like faith, as well? Belly of the whale, you know?

Religion is one of those hot button topics. Not everyone views it the same way or shares the same beliefs, so it can cause some unnecessarily heated discussion...and detract from the reason for this board.

Michelle

Michelle, I did a search on the red flush you get from alcohol. Weird! Most of the results came up as "Asian Flush." One person said an allergy to sulfites can cause it. Everything else talked about this genetic thing that is predominant in Asians, and possibly Jewish people. It has something to do with an enzyme that's supposed to break down something in the alcohol... if I understood it right. I just skimmed the info. I wonder if complications from celiac/gluten sensitivity can cause it by depleting the enzymes? I have no idea. Check out these links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm neither Asian nor Jewish, though it's not unheard of in other populations as well.

A lot of your other symptoms really DO sound like gluten sensitivity. Of course, you already knew that. I really feel for you. It sounds like you really are having a tough time.

You talked about being very flexible. Did you have late developmental markers as a kid? Did you walk late, talk late, etc? There's something called hypotonia. People who have it are super flexible. A hypotonic person can have poor spacial awareness - easily bumps into things and is poor at ball sports, etc. It's not actually a disorder in itself, but it generally indicates that there is probably a disorder that has caused it. I guess that means it's more like a symptom. It's associated with Ehlers-Danlos, like you mentioned. It's also associated with celiac. When information indicated something can be a symptom of celiac, I tend to assume it can also be a symptom of non-celiac gluten sensitivity. I'm actually a member of a hypotonia listserve because I discovered I have it.

I actually was right on time for development as a child, and am very coordinated (was a dancer for 20 years, and a strong swimmer since I was two) and competitive in sports. There is a history of meniere's disease on my dad's side, so if I end up developing that too, then my coordination will be affected...but I'm not seeing it now. I'm really good at my yoga practice though.

Have you heard of peripheral neuropathy? It sounds like what you're experiencing with the numbness in fingers and toes. Symptoms of peripheral neuropathy are highly variable, so as you look at the sites below, don't think you have to have all the symptoms to be experiencing it.

I have heard of it, and have wondered if that is what is causing the numbness...again, a reason for going gluten free.

I also got this from the same article:

Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy. Even some with biochemical markers of malabsorption such as low serum vitamin B12, low red cell folate, or vitamin D concentrations had normal conventional duodenal histology.17 These cases may illustrate the patchy nature of bowel involvement in coeliac disease and the inaccurate interpretation of duodenal biopsies by inexperienced histopathologists...There are, however, patients where the immunological disorder is primarily directed at the nervous system with little or no damage to the gut.

This info is important to note. I could very well be exhibiting many symptoms without obvious villous atrophy...which means I likely will never get an official diagnosis, unless they develop other methods of accurate testing that focus on the triggers for the other symptoms. Dietary response will be the best test for me.

Michelle

So this Jerry dude goes shopping yesterday evening. He decides to look in the health food section (which incidentally smells really nasty, like a pharmacy) to see if he can find Gluten Free bread.

Having learned about Spelt and "flourless" Sprouted Wheat bread, I smugly pass them by. They look nice, but I've learned my lesson.

I see these wierd stacks of what looks like freeze dried tofu. Really nasty looking stuff. I go over to see exactly what this stuff is... It is Gluten-Soy-Yeast & Dairy free "bread"! Now I don't want to offend anyone, but you could build a house with this stuff. I for one don't need a sandwich that bad. I mean I might buy some of that if I want to reinforce my driveway or something...but actually EAT it, I don't think so. Might as well be eating a brick. Say it's better than this...please

Hope everyone is having a great day..j

I wouldn't be trying that bread either. Kinnikinnick makes really good breads that are worth trying. Their english muffins are especially good, and I really like their pizza crusts.

Michelle

Milestones. i think thats the name. its a wonderful place they are so helpful and everyone knew what gluten was and made sure that it didnt get CC. we ended up eating there like 5 times while we were in Victoria!

Milestone's is part of the Cara brand of restaurants. Others are Swiss Chalet, Kelsey's, Montantas and Harvey's. Swiss Chalet is good about gluten free too...they have a pamphlet that outlines all of their foods and ingredients for "allergic" customers. Let your server know and they'll further insure that the cooks/preps are careful not to cross-contaminate. I wonder if all of the related restaurants treat celiac customers with the same care?

Michelle

My husband and I worked together for a few years, before we were married and for a little bit afterward. I was actually his boss for awhile. It really worked well for the most part, likely because we really enjoyed the job(s). For a long time he worked at home (telecommuting) and that also worked, but we had firm boundaries about interrupting him...and his office was away from the busy part of the house so the kids didn't bother him.

I couldn't work with him now, though. And we cannot do renovation projects together...he doesn't have as much patience as me, and we problem-solve very differently so have different approaches to how to get the work done...of course, my way is the right way.

Michelle

This poll is interesting, given that my wife and I are planning to have children in a few years time. She was born severely premature, and so wasn't breast fed, because by the time she was de-tanked her mother's milk had all but dried up. She was always a sickly child- athsmatic tendencies, psoriasis, eczema, poor muslce tone, all of that. Cleared up the second we went gluten-free.

We've talked to her mother, who has never really had any of the celiac symptoms and although she tried going gluten-free nothing much changed, and we're wondering if my wife was simply born so premature that her gut wasn't strong enough to cope, since there seems to be very little in the way of genetic indicator.

I hope that made sense.

My understanding is that celiac is genetic, so perhaps she doesn't get the gene from her mother? Has your wife had genetic testing done? Otherwise, it seems that her trigger to activate celiac was when she was a baby...not surprising for a preemie...especially considering all infants are born with immature digestive tracts. Breastmilk, especially colostrum, is an important part of developing healthy intestinal flora.

Michelle

Hey Michelle. It certainly sounds like you've got something autoimmune going on!!!

What other symptoms do you have? You said you don't feel healthy. Are you fatigued? I put in three of your symptoms - hyperpigmentation, hair loss, and moodiness at this site:

Open Original Shared Link

And I got these possible results: Addison's Disease, Polycystic ovary syndrome

It's always possible you have more than one condition that could complicate diagnosis. But both of those conditions, apparently, are known to cause all three of those symptoms.

Look at the back of your neck in the mirror. Is the crease in your neck a darker color? Look at your gums. Are there dark spots on your gums?

Check out this site on Addison's:

Open Original Shared Link

What's getting worse about your skin? Also, does your hair come out in round patches, or is it thinning?

Are you sure you're gluten sensitive? You might be. And you might have other stuff in addition. But it's possible going off gluten might not solve all of this stuff. It wouldn't hurt to try, though.

It sounds like you need different doctors!!!! Maybe an endocrinologist would be best.

I checked out your link on Addison's and the symptoms don't fit with what I have. The skin darkening doesn't follow with what I experience either.

The list of symptoms I have fills a couple of pages. I've written it all down, and my doctor has a copy. From there I've seen a dermatologist (who incorrectly biopsied for DH...so the neg. result is really inconclusive) who sent me onto another dermatologist/internist for patch testing and confirmed significant contact allergies, and who also suspects I may suffer from psoriasis (which I was told was eczema many years ago - by a different dr.)

I've already seen allergists before, and have a good handle on my IgE mediated allergies (which have changed/increased since childhood). I've had ultrasounds, test for osteoporosis, & barium swallow...all normal. I've seen a GI with whom I've had a gastroscopy (endo) which showed hiatal hernia and gastritis (but she didn't take many duodenal biopsies, so I consider the neg. celiac results as inconclusive)...and from there she confirmed I have "IBS" (for 20 years now!) and "Chronic fatigue syndrome".

I've had problems with numbness in fingers and toes, resteless leg sydrome, insomnia, itchy "acne" which has been gradually spreading from my hairline and behind my ears to my jaws, cheeks, back and chest. My skin is and always has been very sensitive. I am lactose intolerant...and possibly intolerant to other sugars. I'm losing my hair more in one area than others...the left side...and this is the eyebrow that is thinning now too. I don't think the dr takes my hair loss issue seriously enough, because I have a very thick head of hair, so it's really not so noticable to others, except if I were to demonstrate by running my hands through my hair. The eyebrow thing is new, so I haven't brought it up yet w/my dr. Oh, another new thing now is getting flushed when I have alcohol. My friends noticed that I got bright red patches across my nose, eyes and ears when I had a drink yesterday. That was a new thing for me...just a tad freaked out about it! I don't drink very often at all...and not very much when I do.

We've tested hormone levels to confirm I'm not perimenopausal. I do not have PCOS...and had no trouble getting or staying pregnant. My thyroid tests (including free T3 & T4) all are normal, but I want to monitor it because of family history (both sides) of thyroid problems. The only abnormal lab I've had was low ferritin.

My moods swing dramatically, and I get anxious and stressed very easily (note my avatar!) I also have very flexible joints and wonder if that isn't a reason for my hernia (such as Ehlers-Danlos Syndrome)...and could have a bearing on my intestinal issues. Waiting for my colonoscopy to confirm if there is anything obvious going on.

Add to that a family history of GI problems, allergies, diabetes, depression, thyroid, etc. I've put up with symptoms/issues for so many years and am finally making the effort to connect the dots. I just can't continue along this way. So I figure that looking at food intolerances is as good a next step as any. Time to get serious about it.

Michelle

No, nothing that bad sweetie , but Sanjaya is still hanging around. Go watch, report back. I didnt realize you werent watching. I am so sorry.

It hasn't even aired locally yet...serves me right for reading this thread before AI!

Michelle

Anyhow, I've decided to start making him have a bath everyday with an anti- bacterial soap to see if this will help any (worth a try)

Just wondered if any of you 'boil sufferers' had any luck in reducing them using the anti-bac soap???

I've had some luck in the past with using Betadine for washing. My skin is really bad now (itchy "acne" and sometimes boils)...I'm hoping going gluten free will have an impact in clearing it up.

Michelle

nope, removed by the user... Bummer!!!

That is a bummer! I saw the still image on the page, and then got the "no longer available" message when I pressed play. Maybe ABC will have the segment on their website?

Michelle

The link says that the video is "no longer available". Same day it was put online? Strange

Maybe they'll fix it.

Hmmm, It's still working fine for me.

Thank you, jerseyangel, for posting it. I had set my VCR to tape, but set the end time incorrectly...so I ended up with a whole four minutes of recording!! I was so happy to be able to see the video online instead!

Michelle

I'm surprised that this thread has been made "active" again. I thought it had been beaten to death already. It certainly doesn't need to turn into a thread about religion.

Michelle

This topic made me think about the glue in band-aids....what's in that? In my old age I am very, very allergic to the glue in band-aids....I am not celiac, my husband is. I can only imagine what wearing "food products" will do to skin that's sensitive to it.

Adhesives contain all sorts of ingredients...it can be tough to track down the source of reaction. For myself, I found out I'm allergic to potassium dichloride (AKA chromium, chromate, chrome, chromite, potassium dichromate) which is used in some (many?) adhesives and glues (chromium is also found in a long list of other common products) and is a likely cause of my reactions to some brands of adhesive bandages.

Michelle

Hi Michelle. Vitiligo is also associated with Addison's disease.

Interesting...I didn't know that. I'll have to look into it. It certainly isn't something my doctor(s) have suggested, but they seem to be content with just saying, "but you look so healthy!" Blah. I don't feel healthy, and my symptoms certainly don't indicate healthy!

No, celiac doesn't necessarily make someone pale, but it is one of the common possible symptoms. I'm very pale myself.

What do you think about EnteroLab (Open Original Shared Link)? They do testing to determine if a person is gluten sensitive. I believe they can also test for casein sensitivity. I have only had their gene test because I don't have the money (yet) to do anything else.

Well, I'm a bit of a skeptic, so until insurance covers the cost of Enterolab testing, I won't be paying for it. All other labs, tests and doctor visits are covered by health care and/or extended healthy insurance here.

I am gluten free now. Going gluten-free removed some serious symptoms I'd had for a few weeks, and it also removed a couple of long-standing symptoms. A couple weeks later, not being totally sure I was gluten sensitive, I took communion at church and got sick again.

I've been going back and forth on being gluten free. I'm afraid I've been caught in the "I don't have a diagnosis, so why do I have to worry about it" thinking...and using the fact that I'm waiting for my colonoscopy before going back to gluten free. Now that my test got moved to August (!!!), I really need to get back on the gluten free diet and give it an honest shot, especially since my skin is getting worse, my moodiness is getting worse and I'm losing more hair now (including my eyebrows!)

Michelle

I wrote the company and requested a list of their gluten free products. It came in the mail within a week. Also, If I remember correctly, it is on the Delifi Gluten Free Product List for 2006.

Chicken Broccoli Cheese

Savory Lentil..........are the only Campbell's Soups that are gluten free In the United State (not Canada)

Campbell's Bean & Bacon soup is gluten free too (at least in Canada!) But it does have MSG in it.

Michelle

It's very easy to do! I suggest getting a proper laminate blade (for circular saw) for cutting the laminate...it's very tough stuff and hard to cut through. We dulled a blade very quickly when laying floor in our basement...the final cuts were tough to do.

Michelle

Well, I guess we should all be careful not to bump into anyone at the mall .. you never know what they might be wearing.

Sad they're making clothing from the top 8 most common allergies (or are they just the top 8 food allergies?).

Yes, they're the top 8 food allergies. Though it doesn't mean that the food allergens won't cause skin reactions too, especially if you're wearing it against your skin for hours at a time. I'd bet that the top airborne allergens are pollens (of which grasses - like wheat - can be one.)

Michelle

Thanks for your replies, Michele.

I'm not able to easily go to the doctor because I don't have insurance. Plus, I lost my job a couple weeks ago. So I'm doing what I can to research things myself for the time being. The only thing I know I have at this time is a gluten sensitivity.

You mentioned that your skin is darker in scarred areas and where you've been injured and the darkness takes a long time to fade away. This seems consistent with Addison's disease, which is the adrenal insufficiency I mentioned earlier. It's also an autoimmune condition, and it occurs more often in people with celiac than in the general population.

It's possible that's why my skin is like that, but I am very fair and tan quite easily which I think is the more likely reason. BTW, I'm now noticing white patches here and there in my skin...starting to wonder if it is vitiligo, which is also autoimmune. So far it's a big fat negative for celiac with the testing I've done. I strongly suspect I am at least gluten intolerant, and possible casien intolerant...just not going to end up with a positive diagnosis to support it.

Of course, it's completely possible that this has nothing to do with Addison's. It seems it'd be hard to try to figure it out without going to the doctor, since there is a lot of crossover in symptoms between celiac and addison's. Plus, celiac is supposed to make you pale, and addison's is supposed to make you dark (especially in certain areas).

I'll go to the doctor when I can. Thanks again for your posts.

Mary

I'm not so sure that celiac necessarily makes one pale. It would depend on how your body exhibits symptoms and which autoimmune issues you have. Those with DH can end up with dark spots where the lesions erupt. Those who have psoriasis will have a difference in skin colour in affected areas too.

If you suspect you're gluten sensitive, then by all means try the diet. It's free, and it can be a very healthy way to eat.

Michelle

So does the clothing that has food fibre in them say so?

This is really irritating .......could be in more than one way.

I wouldn't look at it as being food fibre so much as being plant fibre. After all, cotton, linen and hemp are from plants too...and people could also be sensitive/allergic to them, and be sensitive to synthetics too. However, I believe it would be required to list the contents in the clothing.

As far as I can tell, the clothing is typically marketed as being made from these fibres, and isn't that widely available yet. I was surprised when I stumbled upon soy and seaweed fibre clothing at Open Original Shared Link. I'll have to watch out for it when I shop in their brick & mortar store.

Michelle

This whole thing is an eye opener for me.....soy, casein, gluten.

Hopefully this won't go anywhere.

They need to have truth in labeling for clothes now too.

Unfortunately, soy fibre clothing already exists...and it looks like corn clothing does too. Not surprised about the desire to do the same with wheat.

Michelle

who already has trouble with many fibres other than cotton