Fairly New To Celiac's And Need Help!

[Vari]

Okay, long story shortened:

I'm a young woman with a long history of health problems, without the ability to see doctors as often as I'd like. In the last year I've been having new problems that lead my Mother (who's a nurse) to believe that I have Celiac's Disease. We know I have a gluten intolerance and all my new symptoms have lead us to pointing fingers. I have iron, potassium and general vitamin deficiencies, fatigue, migraines, and most important to this post and me right now- I've lost almost 30 pounds since going strict gluten free 3 months ago. I used to fluctuate around 165lbs and am now down to 137lbs. I haven't lost muscle tone, and my body fat percentage is really low.

Has anybody experienced this and have ideas of anything I can do or if this is relatively normal? I'm rather worried about this, especially being on a college student's budget with today's economy.

[Bubba's Mom]

So are you saying you know you have gluten intollerance, but have been eating it anyway? If so, that's the reason for the vitamin deficiencies and weight loss.

It sounds like full blown celiac disease.

Some people, myself included, have normal blood tests, but villi damage can still happen.

I'm curious what tests you've had in the past. How do you know you are intollerant?

[GlutenGladi8or]

Hi Vari:

I'm sure that most of us on here have been on the college "shoestring" budget. If you lay out what a typical day of food looks like for you, perhaps a number of us on the board can give a further opinion. I just hope that you're eating enough and what.

[mushroom]

Hi Vari, and welcome to the board

So-called normal responses to quitting gluten are often loss of weight for those who have experienced weight gain from gluten, and weight gain for those who have experienced wasting and weight loss from gluten. In other words, both weight gain and weight loss can be responses to gluten, and these conditions normally reverse when gluten is removed from the diet. If 137 lbs is a good weight for you and you do not continue to lose below an acceptable weight I would not worry about it. On the other hand, if,you have always been 165 and 137 is not a suitable weight for your height and frame then perhaps GlutenGladi8tor will have some suggestions for you.

[Vari]

I now do not eat gluten, and haven't for about 4 months. Before that it was hit and miss with being in denial about it since the problems started two years ago. We figured out that it was gluten by an elimination diet at home, lots of research, and my stepfather has been gluten intolerant since he was a kid (that's where the initial idea came from). Two years ago I started having seizures almost every night that started out so mild I wrote them off as a tick from stress until they progressed to full blown, just short of grand mal, seizures. This without any previous seizure history and the only things any doctor could find was a dramatic potassium, iron and vitamin deficiency and fatty stool. Also, my abdomen felt like it was twisting in knots and I was all of a sudden fatigued for being a relatively healthy active young adult. Part of the elimination diet, the seizure activity slowed down after about a month of not eating gluten and every time I would go into denial I would start having seizure activity again.

A normal day's food intake: Breakfast is a cup of orange juice, vitamins, and some kind of fruit or yogurt (I've never done morning food); Meal #2 is usually a a 1.5 cups of rice with a cup of steamed vegetables and half a chicken breast; Meal #3 is snack-like of a few handfuls of carrots/salad and gluten free dressing and a small handful of peanuts; Meal #4 normally the same as Meal #2. Sometimes I have a handful of Cheetos in between the later meals.

I used to be a vegetarian, and started eating fish & chicken when this started and beef every once in a while. I do not eat pork at all and can't handle a lot of dairy either. And I usually stick to naturally gluten free food rather than stock up on the alternatives. And I've found trying to eat more smaller meals more often helps control the feeling hungry 10 minutes after eating a meal.

[GlutenGladi8or]

If you've read my other posts, I'm typically pretty critical of diet. And, I'm especially harsh when I see a severe lack of protein. However, you diet seems pretty spot on for your demographics. It's well rounded with produce AND animal protein.

At this point in time (and I AM aware of the fact that you don't have all of the resources of a doctor), I think you should schedule a simple blood test. It's absolutely amazing what they can determine with just a few small vials.

You see, there are two different types of inflammation: Those that you can see and feel. And then there is silent inflammation, those that you cannot see or feel. The blood test can help reveal those.

By all means, I'm not an expert on silent inflammation, but the results from a blood test could determine where issues may be lurking.

Don't worry! The folks who draw blood are SO experienced at it that you won't even know they are doing it.

[OleMissLass]

As a graduate student, I can completely sympathize with your predicament. I definitely cannot afford to see doctors as regularly as I would like and the tests to diagnose celiac are expensive.

My big question would be, "Do you feel better on the gluten-free diet?" My celiac tests were inconclusive but going on the diet made me feel better almost immediately. My migraines - which were terrible before - have improved drastically. My skin also looks better and I'm feeling more positive.

The weight loss happens when you first go on the diet, but it should even off after a point. If it does not, there may be something else in addition to your gluten-sensitivity going on. You might have to bite the bullet and go to the doctor.