Newly diagnosed and in denial

[no_symptoms]

Hello everyone,

I'm a 26yo male, Caucasian, 137lb, 5'5", 7.6% body fat, exercise three times a week and eat pretty healthy (Whole Foods, fruit, drink lots of water etc.). Oh, this is not a personals ad

I've recently been diagnosed as gluten sensitive and am still in the after-shock and denial mode.

Going G/F is going to seriously affect my (remnant of) social life. If I go out with someone, I can't eat anything unless I know its complete preparation history, including cross-contamination ?! No bread, sandwiches, toast, cakes, muffins, cookies, biscuits, scones, pancakes, apple pie, frappucino, NO PIZZA?!? What the heck is this?

OK, enough of my rage.

Brief history: I do NOT have the typical digestive symptoms of celiac disease. Maybe a diarrheea or constipation once in two weeks, usually after sleeping only 3 or 4 hours the night before. No chronic fatigue (in fact, I'm very energetic), no brain fog, and the only things I complained about to the health clicnic that diagnosed me (http://www.healthnowmedical.com) were: nose congestion, acne, lordosis (irrelevant) and irregular sleep.

HealthNOW is a clinic that "combines the best of internal medicine, clinical nutrition, physical therapy and chiropractic". They had a seminar at my work place about sleep disorders, which I attended, and got a free consultation. At the consultation, Dr. Petersen suggested that I may be gluten-sensitive and recommended that I go on a Modified Elimination Diet: gluten-free, no dairy, sugar, pork, beef, vinegar etc.

I've been on that diet for 5 weeks and did not notice ANY improvements. My nose is congested as before, the acne hasn't receded, and I have much more wind (that could be because instead of the usual snacks, I eat more fruit, with more fiber?). True, my sleep is better, but I'd rather think that's because of my self-disciplining to go to bed at 2am instead of 4am (and leaving for work at 10am).

I had blood, urine and saliva samples sent to BioHealth Diagnostics. This week, the lab results from BioHealth came back and I sank:

Page 1 - abnormal
Page 2 - OK
Page 3 - OK
Page 4 - abnormal - this shows the gluten sensitivity

After discussing continuing the G/F diet, I was directed to take the following medicine for 3 months. I was told this would help the intestine repair itself, but not cure the disease.
* DHEA 3drops after breakfast, lunch, dinner, sublingual
* Pregnenolone 6drops after breakfast, lunch, dinner, sublingual
* Seriphos: 15 minutes before meal, 1 capsule; @ breakfast, lunch
* Support Adrenals: 2 capsules with meal, @ breakfast, lunch
* Support minerals: 3 tablets before bedtime

What makes me doubt this whole story is:

1. I don't really have the symptoms of Celiac Disease. In fact, I didn't go to the doctor for anything gastro-intestinal
2. After 6-weeks of being G/F and dairy-free, I have felt NO improvement.
3. I don't want to be mean, but guess who sells the medicine? BioHealth Diagnostics. By the way, Seriphos is not FDA approved.
4. I know this is a very underdiagnosed disease, but Wikipedia says only 1% of the Caucasian population is affected.
5. I'm a skeptic

I haven't seen any improvements since going G/F, so I could quit at any time. What will happen? what should I do now?

Staying G/F is not fun. I have a lot of wind, my food bill has skyrocketed, I haven't gone out to a restaurant in a month, and in a recent 6-day road trip, I had to fill my car's trunk with tons of canned fish and canned tomatoes. I'm socially excluded because I can't drink a beer with my colleagues (not that I like beer) and can't go out to company lunches because the cafeteria is very likely to cross-contaminate. I mean, they use the same pots and pans to fry or heat stuff for everyone, and many people want pasta... And I've had it with cold lunches. This is NOT fun!
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Wherever you go, go with all your heart!
http://www.celiacforums.com/search.php?search_author=no_symptoms

[ostrich]

LOL, welcome to the board (from another 26 year old)! Yup, it's very, very overwhelming. Join the rage club.

First, everybody is a little different when healing. Some people feel better in a day. Other people feel better in a year. It veries from person to person.

What made them diagnose you as gluten sensitive? You can still have CD or be gluten sensitive and not exhibit any symptoms. You might want to get some blood work done, or even an endoscopy. If you decide to do either tests switch back to a normal diet for a few weeks beforehand. Otherwise you'll screw up the results. Don't worry, I'd be skeptical too.

Second, you might want to check out this link. It's a list of lots of good info, including our Boot Camp. Yes, eating out is annoying. You basically have to find restaurants you trust and stick with them.

Third, there is no "magic bullet" medicine. The cure is the diet. So if anybody gave you some Rx, you've been had. Sorry. And CD effects 1 in 133 Americans, so your odds are pretty good.

Whew! Anyway, I hope that helps. I'm sure Al and others will jump in here with much more information. Keep us updated.
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[no_symptoms]

Thanks for the MSNBC link, Ostrich.

Great, so there's gluten in my Altoids (wheat maltodextrin), of which I had one every other day or so (HealthNOW never mentioned maltodextrin or the pervasiveness of gluten). Actually, is the amount of gluten in one Altoid significant? If yes, my "gluten-free" 5 weeks were useless!?

The meds I was prescribed were not intended to treat the disease, but to help the intestine heal itself. At least, that's what the doctor told me.

[aklap]

Hi No,

Welcome to the board. Sorry to hear you are having problems

Check out Our Thread on Celiac Blood Tests & More Diagnostic Info. The test shown there are what you want. In your post, I saw no testing for CD or Gluten Sensitivity, so I'm kind of confused as to how or why they think your are GS. There is a saliva test for CD, but it is unreliable from what I've read.

I don't know much about the organization you are dealing with now, but I'd go to a standard general practice doctor or something equivalent.

Not having many [or any] outward symptoms is not uncommon for CD. Only 50 odd percent of the diagnosed cases had gastro problems.

Have you removed dairy? Dairy can cause sinus and stuffy nose problems. You could very well have food intolerances that are causing your problems, it's just a matter of figuring out which ones.


A gluten free diet does not allow for cheating. There is no balancing out your gluten intake as a diabetic does with carbs/sugars. So, yes, an Altoid could cause reaction in some. We are talking parts per millions when it comes to detecting gluten!

The number 1 reason people dont feel better on a GFD is....still ingesting gluten...usually in hidden food ingredients. Knowing what contains gluten and what is safe takes time to figure out. So, I suspect you are still consuming gluten if you haven't spent some time knowing what is GF and what is not. But until you have proper testing, I would not do that.. You must be consuming gluten for the above tests to be as accurate as they can be.

I've run out of time for right now....Good luck! Please keep us updated.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[no_symptoms]

Hi Al,

Thanks for your reply and links.

[aklap]

No,

Is this what you are looking for? Celiac.com's Safe & Forbidden Food Ingredient List
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[mrsppmrxky]

[luvscowznh]

no_symptoms:

I had a HUGE bag of denial when I was first diagnosed as well. Took me a while to actually follow the GF diet. Made a lot of mistakes at first too. The one thing that REALLY brought it home for me how important it is to follow a GF diet was the increased possiblity of intestinal cancer with continued comsumption of gluten. From what I've heard, it's a horrible way to die. Don't know if that helps you any - sometimes it's the scare tactics that do. (Especially after reading your post about your lunch at Red Lobster....)

I know that the food is expensive and it is hard feeling different than other people. It gets a little easier over time. It is never going to be a cake walk though. One thing I do when my co-workers have a pizza party is to bring something I really enjoy and have that while they chow down on pizza. (Sometimes it's the pizza I make at home and reheat when their pizza arrives.)

This is not an easy disease. Especially after your symptoms go away (which they WILL if you strictly follow the GF diet - no more cheesy biscuts at Red Lobster!!!). People will say "A little bit won't kill you". I try to refrain from saying "Maybe not today, but it will someday. " then explaining the incresed risks of cancer to them. Or the other one I want to say is "A little arsnic won't kill you either..." Some people have forgotten how sick I was. (Some people never REALLY saw how sick I was - curled up in a ball crying because it hurt so much...) They think it's something that will go away.

I know it is hard to stick with this diet, but once you start feeling better, you will wonder why it took you so long. I know that's how I felt. I didn't realize how much of brain fog I was in until I came out. Then it made sense to me why I had 3 accidents in 2 years while I was first starting to get sick with Celiac.

Hang in there, no and keep thinking about the good you'll do your body going GF. Also, think about the damage you'll do everytime you see some glutened item you used to love. That always helps me. We're always here to help, too. You might want to look into going to a local support group until you're commited to the GF diet. Knowing there are others out there in the same boat helps.

Good luck!

--Manda
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[bookworm87]

Oh how I remember the day, when I cheated on my diet…After being diagnosed I was thrilled. Finally I had a reason I felt so miserable all the time, before, during and after meals. Now I had a name for my problem.
Alas, sadly at 17, I wasn't the most educated Celiac. I eliminated gluten from my diet, but I did not eat gluten free foods (such as corn/rice products), so my CHO's were very very low. Carbohydrates should make up most of your diet, between 50-60%, and I was down to maybe 10% of my daily consumption. This caused massive ketone production, which made me very sick.
I was upset that eliminating wheat did not do anything. I still felt horrible, little did I know this was a problem I had created. So I gave in after only about 6 weeks gluten free, and one day and had two slices of pizza. I have never cheated on my diet since. Not only did I feel worse than I had been, I felt worse than I had ever felt in my life. That little bit of wheat haunted me for nearly three days!
Finally I balanced my diet and reintroduced carbs. And after a few months I finally felt good. I was overall very healthy, and I began to forget the feeling of being sick. Believe me, if you have been diagnosed a celiac the ONLY way you will ever feel better is going Gluten Free. No matter how long it takes. If you have done serious damage to your small intestine it may take a long time before you absorb food properly. Also, if you have been diagnosed, and problems still persist, talk to your doctor, another problem could have come, or you could have another food allergy you are not even aware of; I discovered a chronic soy allergy the hard way. Finally, go see a nutritionist, especially if you are an active individual, I'd even recommend getting a bone density test done. I hope everything works out for you!

[jayhawkmom]