Do I Have Celiac?

[nicodemus]

I am a 16 year old girl. I have been having stomach problems since mid-October. The first symptom I had was pain diffused throughout my abdomen, and it hurt worse when I moved. I went to the ER and had several blood and urine tests. They concluded that I was slightly anemic and had an elevated white blood cell count, gave me antibiotics and sent me home. I didn't feet better, and eventually (after 3 doctors and a mis-diagnosis of ovarian cysts) I had laparoscopic surgery to see what was going on. The general surgeon who operated on me found an abcess on the outside of my stomach, which he interpreted to be covering an ulcer that had perforated my stomach lining. I had previously been taking large amounts of ibuprofin/naproxen for plantar fasciitis, so this diagnosis made sense to me.

After I spent eight days in the hospital, I went home. I didn't feel that great, but I summed it up to still having effects from the ulcer. Mainly the pain was a dull ache right below my rib cage and some nausea. It seemed to be worse after I ate.

A month after I got out of the hospital, I returned to my general surgeon for a follow-up endoscopy. He saw that the inflammation inside my stomach was smaller than he had expected it to be, given the amount of discomfort that I was still experiencing. He also said that I had a hiatal hernia, and sent me home.

Three weeks later, I was still not feeling better. If anything, I was feeling worse at times. I would have days where I might feel almost 'normal' and days where I wouldn't even be able to go to school, I was so sick. I was also having trouble sleeping at night as I would wake up with a stomach ache and not be able to get back to sleep. My general surgeon ordered a CT scan with barium contrast, which the radiologist read as normal. He, however, thought that the upper 1/3 of my small intestine looked a bit enlarged and referred me to a pediatric gastroenterologist in Fargo, ND (Dr. Blaufuss at MeritCare)

Dr. Blaufuss took my medical history and ran some bloodwork and also did an ultrasound for gall stones which came back negative. He also felt my stomach and said that it felt good. (awkward!) He didn't really seem to think that anything was wrong with me. He even went as far as to suggest that I was exaggerating my symptoms, was possibly depressed and was probably giving myself anxiety attacks when I woke up at night.

We left the doctors office with his promise that he would call if anything abnormal showed up on the bloodwork. His office called about 30 minutes after we left, explaining that I was very anemic and had probably been that way for quite some time, because my red blood cells were tiny. Dr. Blaufuss figured that the anemia had come from blood loss because of my ulcer, and he prescribed iron supplement pills which I have been taking for about a month now.

I have been keeping a food log for a while now and I've noticed that eating things with wheat in them does make me feel worse(although it could be something else that I'm eating at the same time). Dr. Blaufuss said that I was negative for celiac on my bloodwork, but after some research I found that it isn't necessarily the most effective way to diagnose celiac. I don't know what tests he did or what the result was.

Here is my food log:

Januray 7

No Breakfast

Lunch: salad with ranch, crackers

**felt mildly nauseated after**

Supper: sandwich--turkey on white bread

**felt sick after: nausea and dull stomach pain**

January 8

Breakfast: Blueberry muffin, Rice Krispies

**felt medium-sick after(nausea and dull pain) for a couple of hours**

Lunch: 1/2 turkey/wheat sandwich, Rice Krispie bar

**medium-sick again**

Supper: steak, french fries, green beans

**not too bad after; a little sick but almost normal**

January 9

**felt a little sick when I woke up, then worse and worse all day long**

Breakfast: wheat toast with peanut butter

Lunch: Turkey/wheat sandwich, chips

Supper: subway sweet onion chicken teriaki with lettuce, spinach, black olives

**didn't sleep well that night**

January 10

**still felt a bit sick when I woke up**

Breakfast: Mini Wheats with skim milk

Snack: chocolate cake

**felt a little bit sick after**

Lunch: peanut butter sandwich on white bread

**medium-sick after**

Supper: chili with noodles, cornbread, wour cream and cheese

**felt okay for a few hours, but then I got really sick and couldn't sleep all night long**

January 11

**still felt medium-sick when I woke up**

Breakfast: white toast with cinnamon

**medium sick after**

Lunch: tuna sandwich

**really sick after**

Supper: popcorn chicken, french fries and toast

**really really sick after**

January 12

**felt sick at night and only slept for a couple of hours at a time, felt sick in the morning too**

No Breakfast

Lunch: Noodles with cheese, peanuts

**felt medium sick a couple of hours after**

Supper: Spaghetti with meat sauce and parmesan cheese, garlic bread

**felt really sick after and couldn

[lightening16]

Hi

I would recommend that you suggest this to the doctor and have the blood tests done right away. If they won't do them... I can't imagine them not... they seem to be ready to do almost anything to you right now. Then try going without gluten for a month and see how it goes. The problem then is that you won't be able to do the blood tests after that because the antibodies won't be in your blood after that... the situation that I am in right now.

The symptoms seem just like mine and going gluten free made a huge difference. The bloating and sore tummy went away in a couple days. My energy levels took about a month to start coming up and about 3 weeks for me (mentally) to feel like myself again.

Good luck and call the doctor back tomorrow with your suggestion!

[hathor]

She said she already had the blood tests and they were negative.

You could try for an endoscopy. But this doctor sounds like a dismissive jerk. He might not do one. And there are negative results possible for that with people who have clear gluten problems.

If it were me, I would avoid gluten and see if I felt better. If I still wasn't convinced, I would get Enterolab testing, for which I don't need a prescribing doctor and I wouldn't have to be eating gluten. In fact, this is what I did.

Enterolab can also test if you have intolerances to casein, soy, egg, or yeast. Casein and soy intolerances, in particular, seem to crop up regularly among those who have problems with gluten.

Did you ever take probiotics after your course of antibiotics? Antibiotics will also kill off the beneficial bacteria in your gut and lead to digestive problems. If you haven't taken probiotics yet, this would be a good thing. It certainly can't hurt you and may help.

[Takala]

I am really glad you posted a detailed food diary because if you are this attentive to detail you are probably going to be able to figure out if you have any food intolerances.

There's celiac, which is the disease of the digestive tract you get if you are intolerant to gluten, the protein part of the grains of wheat, rye, and barley. But there's also gluten intolerant, which you might be, but not have full blown celiac yet. The symptoms of many people who are gluten intolerant are not bad enough that they get diagnosed at a young age, so they may be far into adulthood and develope secondary auto immune type diseases before being diagnosed OR figuring it out on their own. And it is said that about a third of the population is carrying the genes that pre dispose them to being celiac, but only a smaller percentage of people go on to develope gluten intolerance, after being stressed by something in their enviroments.

When I first started reading on this site, I kept running into references to the "gluten challenge" test, and I thought, oh, cool, another medical test I could flunk, I wonder what this is. So I finally found someone's description of it, it's you stop eating all gluten for a month or 6 weeks, and then eat some deliberately and see how you feel. If you get sick, there's your proof.

So you can do this on your own, (with the help of family members) and see what happens. You probably won't have to wait a month, about 5 years ago I was starting to self diagnose after years, no, decades of symptoms and being blown off by doctors and I was on another website and read a set of completely matching symptoms and food restrictions that helped, and had the "aha!" moment. I knew immediately and the food trials just confirmed it. I loved the response I got from the relatives ("so you're into this eating "healthy" routine, eh? I could never do that..." ) fortunately I'm an adult so I could just blow it off, and my spouse has been extremely supportive once he realized it actually helped.

When I looked at your food diary the first thing I noticed was that your current diet is way low on things like fruit and green vegetables and way high on cereals, breads, gravies, sauces, breaded and fried things. Even if you are not gluten intolerant by the time you are 40 if you keep eating like this you are going to be an acid reflux walking advertisement for pepcid ac. These high carbohydrate diets typically are eaten because they taste "good" if you've been brought up that way and they also seem to satisfy carbohydrate and sugar cravings. If you are not absorbing enough nutrients in your stomach and intestines from the foods you eat, especially the B vitamins, iron, and the minerals calcium and magnesium, you can get these terrible sugar cravings because the kidneys are sending messages to the brain that the blood levels of various nutrients is way off.

To battle the carbohydrate cravings then, if you try to transition to gluten free without going crazy, you will need to eat more fresh fruit, more vegetables, more protein, more fat from "good" sources such as olive oil and nuts and eggs, and start taking a good gluten free multi vitamin and a calcium supplement and a magnesium supplement, you may also need to take a B complex vitamin.

So you would be eating more like this:

breakfast:

eggs and meat, fruit , even a vegetable

safe gluten-free yogurt, fruit, nuts

safe gluten-free rice cake, milk or milk subsitute, protein, nuts, fruit

lunch:

salad with protein such as safe meat, hard cheese, fish, hardboiled eggs, nuts

fruit

safe salad dressing, such as olive oil and apple cider or balsamic vinegar and a little salt + sweetener

grilled chicken or tuna with rice, vegetable

corn tortillas with grilled meat or safe cheese or even safe gluten-free peanut butter and jelly

dinner:

meat, 2 veggies, at least one a green vegetable, fruit

something homemade that is gluten free, such as rice pasta and gluten-free spaghetti sauce with hand grated cheese or homemade gluten-free pizza

Snacks:

raisins, nuts, good quality gluten-free dark chocolate (hershey's kisses are okay if you can tolerate lactose, or milk sugar) Lara Bars, gluten-free coconut macaroons, etc

cheese: the only cheese I trust is that which comes un sliced and you have to cut it yourself, the "american cheese" slices are full of wierd things. Because I am older I don't tolerate lactose in unfermented milk products very well, but I can still eat some dairy if it is aged cheese or certain brands of yogurt. BEWARE many yogurts contain hidden gluten or hidden lactose, milk solids added after processing to thicken, read the labels carefully.

You would want to start out with the simple foods that are as unprocessed as possible and then if that goes well, you can add in more things that substitute for regular wheat products. But be forewarned, with the baked goods that are gluten free the homemade ones are 10 times better than the store bought ones.

You also should be careful not to use lipstick that contains gluten nor shampoo or body lotion, because you can get all of this into you mouth accidently and make yourself ill that way.

Good luck to you as you explore this!

[Soonerman]

Ask your doctor/nurse for a copy of your test results for celiacs, and then post on here, I would be interested to see what he is diagnosing as "negative".

[nicodemus]

Thank you everyone for replying! Sorry I didn't get back to you all sooner--vacation in Puerto Rico got in the way. It was fun, but almost everything I ate made me sick. Almost everything I ate had wheat in it (not too much variety on the little island that we stayed on). One of my staples was a baked potato--yummy!

Takala--I appreciate your concern with my diet! I have to admit, I know I don't eat the best, but lately it has been worse. You know how when you don't feel well, the only thing you want is yummy, fatty comfort food? Yep. Normally I do have a lot more fruits and veggies, I promise. I am a distance runner, so I need to go for the more high-calorie things just to maintain my weight. I'm sure I could be doing it in a more healthy way, though.

Recently, my stomach has started to get really big and bloated after I eat. I have generally just been feeling worse and worse. I also have an itchy rash on my arms, upper legs and chest (I'm going to get some pictures online soon). It isn't very large, but it does look like pictures I have seen of dermatitis hepatiformitis. My mom called Dr. Blaufuss again today, asking about the bloatedness and general sick feeling (she thinks the skin rash is from the sun or swimming in the ocean--I don't think it's from the sun because I have it in places that the sun didn't shine--but I suppose it could be from the salt water or something). He said that I am getting bloated after I eat because I swallow too much air. He also said that my blood tests were positive for ulceritis colitis. How he discerned from blood tests that I have colitis is beyond me--I was under the impression that blood tests for anemia and elevated white blood cell count were only possible indicators for the disease.

After doing a little more research, I've uncovered a few other symptoms that might point to celiac: I get cold sores and the corners of my lips are often cracked and sore; at night my knees and hips hurt, almost like they are having growing pains (although I am completely done growing--I have had numerous X-rays done and my growth plates are completely closed off and have been for almost a year). Also, if celiac runs in families, then my sisters could also be considered: one sister has been feeling generally sick for 1/2 a year, feels dizzy and lightheaded a lot, but has no reason for it on her blood tests; one sister gets severe migrane headaches and has horrible enamel on her teeth (even though my uncle is a dentist and we have had regular dentist appts, flouride, etc.); and my third sister is in the process of possibly being diagnosed with Type I diabetes (which I have heard can increase risk of celiac).

Coincidence? Me being paranoid? I don't know.

Dr. Blaufuss said that, while he still doesn't think there's anything wrong with me (other than depression, recovering from a peptic ulcer, anxiety attacks and now, swallowing of air), said that if I'm still not 'feeling better' (aka "giving up my charade of pretending I'm sick") that he'll do a colonoscopy and endoscopy. I wanted to just give up and find a new doctor, but my mom (and the one holding the purse strings) said that we should keep trying with Dr. Blaufuss, since that is who my general surgeon, who did the laparoscopy, 1st edoscopy and CT scan, recommended. *sigh*

I'm just sick of being sick! It just seems to me that if the only things I was feeling were leftover pains from my ulcer that they would be getting BETTER now, not worse. I don't feel like the pills for my anemia are doing much either; even though I have been taking them for a month, I have felt no improvement in my running and actually feel even MORE tired than normal (I can slowly jog about 1/2 a mile before a walk break, and I am completely out of breath and tired from that simple exercise). I went from popping out of bed in the morning, running 8-13 miles, then going on with the rest of my day, to sleeping in late, going to school, coming home and basically going to bed.

Sorry to rant all of this to you guys--I'm just not satisfied with what I'm getting from my doctor. Hopefully we can resolve this soon.