Hello.. I too am a new poster. Suprise! I have ?'s...

tangerine · Joined: 25 May 2008 Posts: 5 Location: Florida

Hello board. My name is Candice, and I too think I have CD.

I have read some posts here and it is pretty clear to me at this point that I need to be tested, and also, that I will need to be consuming gluten to get an accurate diagnosis. Problem: I have been off the gluten for a few months now, with the exception of a few slip-up's here and there. Should I just start eating it again? If a person was NOT a celiac, and went without for a few months, would they have a negative reaction when reintroducing gluten? After reading the LOOOOONG list of ingredients that "hide" gluten in them, and upon recently learning of the many, many ingredients I had no idea were gluten containing, I now know I have definately been consuming SOME gluten.

So, of course I am curious to know what others with CD think about my symptoms and would like to share my experiences. If anyone out there has a few minutes to respond, I would really appreciate it. =0) ...

* I started getting these little red bumps on my upper arms when I was about 12. I thought they were acne, or some other puberty related issue, but by the time I was 23 and they hadn't gone away, I figured they were just some genetic defect I would have to deal with for the rest of my life. My dad gets them too. They would flare up at times and die down at others and the dermatologist told me to wash them more frequently. They didn't go away, and just seemed to do what ever they wanted. They would come on more fiercly or lay low, depending on the day. When I became a vegatarian and started eating way more carbs, they got REALLY bad. They don't itch, but they are definately "blister" like protrusions that hold fluid. I hate them. But now that I have been off the gluten for a couple of months, my arms look better than I can ever remember them looking. Outside of my memories of being a young child playing in my kiddie pool.

* I started getting itchy, REALLY itchy blisters on my wrist bones and on the segments of my fingers closest to my hands this past year or two ago. I thought I was allergic to my watch and rings. Or at least the metal they are made of. BUT .. The blisters wouldn't be there all the time. Which made me wonder if soap was getting stuck under them and giving my skin an adverse reaction.

* I just last month got similar itchy spots on my shin. And my wrist with no watch.

* I thought I was having gall bladder problems a couple years back. I kept getting this reccuring pain in my abdomen, right below my ribs, and on my right side. It really hurt. A lot of the time. Around this same period, I was having intense heartburn. Often. So I did a bunch of research and it sounded like I was definately having problems with my gall bladder. I am a firm believer in alternative medicine and went to see my chinese doctor for accupuncture. The symptoms went away.

* I had this rash show up on the trunk of my body during a very stressful time in my life, about five years ago. It was circular and kind of itchy and was on different areas of my torso; primarily on my belly, down to my groin, under my breasts, and on my mid back. The doctor gave me some cream and and it went away. It came back a couple years ago, and it came back bad. It started out as a round patch, maybe the size of a dime, and then the "patch" kept replicating itself. Lots and lots of little dime-sized red blotches that started overlaping and made bigger and bigger red patches. Itchy red patches. The dermatologist said that people in Florida get skin fungus a lot, and not to worry. The steriod cream would get rid of it. It did.

* The skin under my eyes got dark a couple of years ago and nothing seems to make it go away. Not sleep. Not vitamins. Not expensive eye cream. Nothing.

* I have felt tired for years.

* I have been "moody" for years.

* I get a lot of headaches.

* I was on a riverboat in Europe for a few weeks and PIGGED OUT on tons of pasta and breads and desserts and stuff... I got these nasty patches of super itchy gross stuff on my elbows. I thought it may have been the water on the boat that I was bathing in.

* I would get gassy a lot before I cut out the gluten. Sometimes I would have such painful gas that I would be doubled over for hours.

* I used to get a lot of ulsers in my mouth when I was a kid.

* I have a bad reaction to beer. I have had a bad reaction to a lot of alcohols, but especially beer. Wine and me get along great, but I have had a lot of negative experiences with beer.

* I've had knee pain my entire life.

* I put on weight suddenly and have had a terrible time taking it off.

I appologize for this being so long, it is just something that freaks me out... I'm sure you can all understand. I don't know if I am just connecting all of these things because I want them to all be linked to one thing that can easily be controlled, or not. Do these sound like your symptoms before you were diagnosed? Could this all just be a conicedence? I have no health insurance and really don't want to go through a bunch of doctors appointments and incur the cost. I know that eventually I would be tested, as I will have insurance in the future, but that would require me to be eating gluten and I seriously don't want to damage my body any further than it already may be. I am confused.

Thank you for listening... I really appreciate it!
_________________
~Candice

Luv2Dance · Joined: 15 Apr 2008 Posts: 59 Location: Colorado

Hello Candice,

It is highly possible that you are gluten sensitive. It is up to you if you want to start eating gluten again formerly in order to go through the testing. I know many people feel such relief from not eating gluten, that they never go back to do the testing.

There is one test that you do not need to be eating gluten for. My doctor swears by it, but it is very controversial. It is through Enterolab and can be ordered on-line. If you feel that you don't want to be eating gluten to get tested, you could start there. If you want more validation, you could certainly start eating it again have have the Celiac Panel performed. Its all up to you. You do need to be eating gluten for the blood tests.

Your symptomes do match. Gluten intolerance does effects so many different aspects of the body. Good luck.

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

tangerine · Joined: 25 May 2008 Posts: 5 Location: Florida

Hey guys... Thanks for the response and the encouragement.

I will look into the self test. Thanks for letting me know about it.

I guess for now I am going to continue to eat gluten free. I feel better, my skin looks better and that is enough for me to want to continue to pursue this path. The lifestyle changes are so profound it is nice to know that there is a group of people out there that have been through it and understand. =) I started laughing yesterday at lunch after I abscent-mindedly poured the "mystery" sauce over my tuna steak, realizing it was soy sauce. I had this vision in my head of me carrying a "first-aid" type kit, full of condiments. Might not be a bad idea!

So non-celiac gluten sensitivity .... I have never heard of this. I will look it up and get back with you as I am certain I will have questions!

Have a nice day!
_________________
~Candice

ostrich · Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska

tangerine · Joined: 25 May 2008 Posts: 5 Location: Florida

So I have been eating as gluten free as possible and have been very concious of everything I have put into my mouth. I am reading every label and have been buying gluten free items at the local health food store. I was curious if anyone has any suggestions or personal experience relating to my current health concerns.

* I fell full very easily.
* I get abdominal discomfort every time I eat that usually lasts for at least an hour.
* My BM's are very smelly.

It doesn't make sense. I am NOT eating any gluten besides the trace amounts that may be in gum or chocolate (which I only occasionally eat anyway)

* I have these super dark rings under my eyes that get darker every time I eat.

Do you guys think my digestive track has just been out of whack for a long time and I never noticed until now? I am worried and confused... Any input would be a huge relief. Thanks. CK.
_________________
~Candice

Luv2Dance · Joined: 15 Apr 2008 Posts: 59 Location: Colorado

Hello Tangerine.

What you are experiencing sounds like it possibly could be either systemic candida or another food allergy. Of course, I'm not a doctor, but they do cause discomfort when you eat, gas, strange smelling bm's, and the fullness feeling.

Have you been on a lot of anti-biotics in your lifetime? Or rather recently? What about anti-inflammatory drugs? Do you feel tired?

With systemic candida, what happens if you have been on antibitoics a lot in your life, is that the "good flora" in your system gets wiped out, allowing the yeasts to overgrow causing symptoms that you mention. Other symptoms include: joint pain and muscle aches

If you find a local naturopath, they can sell you the test to do. (Blood tests are NOT sensitive enough. It has to be the stool test.) If you prefer not to do the test, you can always do a candida cleanse. They are very beneficial. It includes cutting out all simple carbs (including fruit and juices) for a period of time, while taking candida killing herbs. You can get anti-candida formulas at your local health food store or order them off of the internet. Adding beneficial bacteria such as Acidopholus and others is EXTREMELY beneficial whether you have systemic candida or not. I recommend taking probiotics no matter what. They even help those of us with Celiac.

There are books about it such as The Yeast Connection Handbook and Tired, so Tired. They are by the some author. He repeats the same info, but there is a little more in the "Tired" one, so I'd check that one out first. You can also do internet research on "systemic candida" to see if it fits.

The key to having systemic candida is if you have been on anti-biotics. If you haven't been, I seriously doubt that you have it.

Another possibility is easily another food allergy. Possibly dairy and/or egg. Do you notice your symptoms more when you eat eggs, tuna salad, mayonaise, white sauces, cheese?

I myself am allergic to both dairy and eggs. Before I knew what was happening, I used to wonder why I would feel so full and bloated when eating only a tiny bit of tuna salad, and white sauces on spaghetti always made me very ill.

You can either keep a food and symptom diary to know how you feel when you eat what. This helpd many people. It didn't help me because sometimes my symptoms are immediate, and sometimes they are delayed. What helped me was the IgE and IgG blood tests for food allergies. Again, you can ask a local naturopath or another type doctor to run this test. I don't know where you can order it on-line. Mine was through Bio-tech.

Good luck. I hope that all helps.

tropheyboys · Joined: 07 May 2008 Posts: 12 Location: Trenton, OH

Luv2dance,
I have a quick question about your IgE and IgG tests. I had the IgG done and found out that I was allergic to just about everything. This was done by my Dr. who is really into the more natural stuff. I was depressed but started to change my diet. I then took my son to an allergist and then went back for myself and he said that IgG levels were not accurate and that I needed to do the IgE levels. So I then called my Dr. and told her I wanted those done and she said that it wasn't necessary because it is a debate and she feels strongly about her side and he believes his research is right. What did you find between the tests did they reveal the same findings or is one really better than the other? Sorry so Long I just happened to read this and wanted to ask.
Laughing

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2442

Al,
Does DH also cause blunted villi?

Candice,
To determine if your red bumps are DH a dermatologist will take a biopsy of them or one. I would make an appt with a dermatologist ASAP to get one of those bumps biopsied before they go away.

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

luvscowznh · Joined: 23 Dec 2004 Posts: 320 Location: Groton, MA

Noatak · Joined: 13 Nov 2005 Posts: 492 Location: Massachusetts

I just got thru reading the book on Celiac Disease by Dr. Peter Green and he had some very interesting comments to make on DH and the necessity of using GF skin care products and make-up.

Dr. Green states in his book that it is not necessary to avoid gluten containing topical products, even if you have DH. The reason it takes so long for DH to clear up is because it generally takes up to 2 years for the IgA deposits in the skin to go away and these are what causes break-outs. The only reaction generated is by ingesting gluten, not from any topical cause. Gluten cannot be absorbed through the skin. He also states that if there is a reaction from a skin product, it most likely means you have other sensitivities to something in the product and should see an allergist about it. So, if it takes someone a couple of years for their DH to clear up, this is perfectly normal.

I would think that the only concern a person would have with usage of gluten containing products would be with children because they are always putting things in their mouths and could end up ingesting enough to cause a problem. I tend to believe him from personal experience because I do not check skin care products for gluten content as I do not ingest them and my blood work always comes back in the awesome range.

Seems to me after reading the book that those with DH have a harder time healing because of the time involved. Some may become confused that they are still ingesting gluten when they are not, because of the time involved in healing. It's a good read and dispelled many misconceptions there are about Celiac Disease. Some of what I read surprised me but his credentials are stellar and he doesn't seem to be one of those doctors that are clueless about the whole thing.

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

I think it's wise to avoid gluten in any form, even personal care products, because there is just too much risk of putting your hands near your mouth after using these products. There are a lot of anecdotal reports of people reacting to topical gluten exposure, myself included. Just because the science hasn't proven it yet, doesn't mean something can't be true. That's why we have scientific discoveries made every day. Too many people on this board know how unreliable the science can be at times. I'm not saying Dr Green is wrong, I'm just saying that maybe everything about this hasn't been discovered yet. I do believe that getting DH is a direct result of ingestion of gluten. I just wonder if some people with gluten intolerance can have their symptoms exacerbated by touching gluten.

As far as I'm concerned I'm not going near gluten in any form.
_________________
Steph

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2442

While Noatak and I have far from agreed on many/most things I do agree with her on skin/hair care products.

I do have some guidelines though. I verify that anything that goes on or near my mouth (lipstick, chapstick, sunscreen, etc.) and hand moisturizer is indeed gluten free. I also don't use hairspray or any other leave-in haircare products because I have a tendency to run my hands through my hair with regularity.