Could All This Be Celiac?

[morningstargirl]

Hi Everyone, I'm new here and this is my first post. My name is Connie and I'm 41. I am in the "wondering" stage and seeking some advice to figure out if I'm on the right track with celiac disease. I hope this doesn't get too long; I've got a lot of things going on and I'm trying to figure out if these all stem from one source, so please bare with me. For 20 years, I have had GI problems; mainly chronic constipation, bloating, and severe cramps when I finally do go. At its worst, I've been constipated for 2 weeks straight and unable to keep food down due to lack of room, I think. I've been diagnosed with lactose intolerance and IBS. Upper and lower GIs revealed nothing unusual. About 4 years ago, I developed geographic tongue and blood work was run, but everything turned up normal. I've always been small (5'4" 115 lbs) and not had problems with weight, even after giving birth to my daughter in '98.

About two/three years ago, I began gaining weight though my diet and exercise hadn't changed, and I ate well... organic foods, whole grains, low fat, etc. My cycle went wacky, my breasts grew two cup sizes and my feet grew a full shoe size. I began getting severe night sweats. And, something felt funny about the weight gain; I felt thick and sort of heavy or dense all over. Some days my thighs would rub together and then the next day they wouldn't. I could fit into a pair of pants on Tuesday, not on Wed & Thurs, but then again Friday. I also noticed I had some sort of bulge or swollen spot on my outter left thigh. I figured it was pre-mature menopause.

Then last December, things got worse!

I simultaneously developed a rash on the back of my neck and severe dandruff. I was initially diagnosed with ringworm by my internist. When treatment didn't work, I was sent to a dermatologist and re-diagnosed with contact dermatitis from hair color. Although I took several different prescription medications, had a negative chemical allergy test, switched all hair care products to chemical-free varieties, and got herbal low-chem hair colors, my dandruff grew worse, my hair began falling out and the rash spread to under both of my eyes. I also started getting painful cracks in the corners of my lips. I was re-diagnosed with seborrheic dermatitis and possible lupus. No tests were performed.

During this same time, I had a cyst removed from behind my ear. I'd been getting these cysts behind my ears a few X per year for about 8 years or so, but the frequency and volume had increased over the previous year and they started showing up on my face. Having little faith in Western medicine from other earlier experiences and my recent dermatologist, I consulted a holistic chiropractor/nutritionist. She ran labs and I learned I had insulin resistance, a hormone imbalance, severe vitamin D deficiency, and was borderline for lupus (80 ANA--greater than 80 for 30 years plus is considered lupus). The nutritionist put me on the South Beach Diet to get my insulin resistance under control. I removed all carbs from my diet for 30 days and noticed a shift in my weight (from stomach to butt/thighs), but no weight loss. I also felt the thick feeling come and go; I could actually feel my thighs swell from day to day. I thought it must be the hormone imbalance. After 30 days, I re-introduced natural carbs (carrots, bananas, etc.) back into my diet and a reduced amount of whole grains. I spent 6 months under the nutritionist's care on lots of vitamins and supplements with little change. In July, fired the nutritionist after she told me to "stop reading so much".

Since then, I've been seeing an integrated medicine doctor (studied under Dr. Andrew Weil) and doing things on my own. I'm taking a good-quality liquid vitamin, a few supplements, a green food (blue green algae), did a detox, and reduced grains down to just occasionally. I've seen lots of improvement; the volume of acne slowed greatly, the seborrheic dermatitis cleared up 75%, the hair loss stopped and my cycle has returned to normal. Yet, I'm still experiencing constipation, light edema that comes and goes, some seborrheic dermatitis, night sweats and cystic acne. A week ago, I decided to try a 100% gluten-free diet. I've noticed less edema, the last bits of acne seem to be going away, but my seborrheic dermatitis seems a little worse and there's no change in the night sweats. I shoud also mention that within the past week or so I switched to a non-liquid vitamin.

So, whatdayathink (besides this got too long)? Can Celiac be the root cause of all these medical issues? Am I barking up the proverbial right tree? Any thoughts or advice will be GREATLY appreciated.

And, BIG thanks for taking the time to read my post. I'm sorry it turned into a book.

Connie

[zansu]

I'm sorry to hear about all the trouble you've had figuring things out. I'm not one of the experts, they'll be along. But I can tell you that I was one of the weight gainers; and my weight would fluxuate 5-7 pounds in a day before I went gluten-free. It may not be one of the more common symptoms, but it was one of mine.

Good luck with your detective work!

[Guest nini]

you may be on the right track with Celiac, of course the standard Western Medicine recommendation would be to keep eating gluten and get blood tests and biopsies to confirm it... however the rate of false negatives with those tests is too high for my comfort and most Dr.s will tell you absolutely if the tests are negative you can't possibly have it. That is just not true. If the tests are positive they can absolutely confirm the dx but a negative can never ever rule it out. That being said, with your experience with Western Medicine, you sound like the kind of person to be comfortable with a self dx IF your dietary response is positive.

With your history you may need to give the diet 6 months or more before you notice any major improvement, BUT you may notice symptoms coming and going before then. IF it's Celiac, average healing time is 2 years but it could be longer, (could also be less). You may also be lactose intolerant as well and may have developed other related autoimmune disorders. I'm glad you have an integrated medicine Dr. that can be a partner in your quest for solving your health mysteries. Others on here have found Lyme disease to also be a factor as well as numerous other intolerances like Lectins and Salicilates (sp?).

Ultimately it's your decision how you want to pursue this, do what you feel comfortable with and feel free to ask any questions you want here, we will do our best to answer them.

[i canary]

Connie like you and Zansu I used to have big weight gain/losses too. I had three sizes of clothes in my closet. I would have to use a measuring tape each morning to know which set of clothes to choose from. Glad I'm done with those days.

Going gluten free for a few months might be a good experience/experiment. Just keep in mind it isn't just food that you have to elimate gluten from. Medications, vitamins and supplements can also have gluten in them.

[CarlaB]

It could be celiac, people have all kinds of symptoms from it. It could be something else though. For me, I have a real gluten intolerance and symptoms get better off gluten, but I'm not entirely better off gluten, which indicates that there is something else wrong as well. You can try to go gluten-free and see how you do. Give it some time. If your symptoms don't resolve but are somewhat better, stay gluten-free and look for whatever else it may be.

[nucci]

Hi. I'm new here, too and I have been on the gluten free diet for a week. I have experienced one of the same problems as you. I have been very bloated and had edema and would experience the pants fitting/not fitting issue every few days. I have noticed a huge decrease in the edema and my pants are fitting better after only one week gluten free. Maybe you should give it a try. Good luck!

[morningstargirl]

Hello Everyone,

Thank you so much for your replies and advice. Its great to learn others have experienced the coming-and-going edema and it's not all in my head! I'm going to continue with the gluten-free diet and see what happens. I have noticed a great change in the edema even after only a week; I actually feel more like the old me. It's hard to explain what I mean with that; if you've had this edema experience maybe you know. I am reading through labels on EVERYTHING... vitamins, supplements, condiments, soups, etc. Trader Joe's, and Whole Foods have gluten-free lists of their products so I've picked them up and am following religiously. I'm also looking into Enterolab for the Complete Gluten Sensitivity Panel with the gene test. I'm waiting to hear back from BC/BS insurance about coverage for those tests. Enterolabs is the only place I've found that won't require me to return to eating gluten. I've also contacted me integrated medicine doc to see if he has any info on the quality/value of those tests since they are a bit outside the box. The essay at the Enterolab site makes sense though and I know Western medicine doesn't consider things a problem until they reach the final stages (a major failing in my opinion). So, does anyone have any feedback on Enterolab and/or their tests?

Thanks again SO MUCH for all of your input. I'm crossing my fingers and hoping I've finally solved the mystery. Time will tell, as will the tests.

Happy Holidays to you all,

Connie

P.S. I canary, I loved your little blurb at the end of your e-mail: “This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws.” FANTASTIC!!!