Before You Were Diagnosed...

[joyfulseraph]

(I wasn't sure where to put this...I thought this section was okay. Sorry it's kind of long...)

Before you were diagnosed with celiac disease, what did you think you had? or what was going on with your health?

Did you feel hungry nearly all the time?

Did you get diarrhea frequently, which seemed to be caused by certain foods?

Did you have some abdominal pain?

This is only what I've been noticing, mainly, for the past few years. And I was wondering if anyone here can relate because I have been trying to figure out atleast a little bit what could possibly be wrong with me. I know..."see a doctor"...but I am only just wondering, I will see one someday...maybe...I don't know. I have a fear of doctors. I only want to know if anyone has had similar experiences and then found out about celiac....

Whenever I eat, within an hour I feel hungry again. And within 3 hours, I am really hungry and need to eat. By 5 hours, I am starving, have a hunger headache, I end up getting pain in some spots, such as my arms, or feet or hands, my mouth feels spongy and watery, I feel drained, no energy, sickly.

Tons of foods can cause me diarrhea or some other kind of unpleasent symptom.

I mostly can just eat white bread, lean meat, some veggies, and noodles. (and drink some tea and water) Which, if it's celiac, doesn't make sense to me because bread and noodles have gluten in them, but it could be possible?

I avoid oatmeal, bananas, apples (and other fruits too, but those are the top ones), peanut butter, mayo, dairy - milk, cheese, icecream etc. and even soy milk. fried food. Those things I definatley can't have.

When I was drinking lactose-free milk, it was okay, but I ended up getting kidney stones, I'm guessing because I couldn't absorb calcium or something...

I used to get diarrhea right away if I ate bad foods, but sometimes in the past several months, it can take a while...even a few days.

This problem of mine keeps me home nearly always because I am scared of getting diarrhea or pain away from home and I can't eat out and I get very hungry...so I end up getting drained and sick.

I noticed on the list of symptoms for celiac, one involves getting a rash of some kind. About 6 months or so, before I got this digestive problem, I used to have something like eczema on my hands for nearly 2 years...it was terrible, so itchy and annoying.

My hair has also gotten so thin, but I haven't found that related to celiac yet or any other digestive disorder.

From Mayo clinic website -

Symptoms

There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as:

Intermittent diarrhea

Abdominal pain

Bloating

Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections, anemia, skin disorders or a nervous condition.

Celiac disease may also present itself in less obvious ways, including:

Irritability or depression

Anemia - possibly

Stomach upset

Joint pain

Muscle cramps

Skin rash

Mouth sores

Dental and bone disorders (such as osteoporosis) - not sure

Tingling in the legs and feet (neuropathy)

***************

I can relate to almost all of that [bolded]. I thought I might have IBS or crohns, but IBS doesn't make sense anymore and I don't know about crohn's, but now celiac, could be a possibility. Digestive problems are so hard to figure out.

[ravenwoodglass]

Welcome, you do sound like you could be one of us.

For about the first couple years after the D set in it would be a 3 or 4 time a week thing. Then it went to everyday, my system would 'clear out' every morning, then it went to day and many painful sleepless nights. At first the D was painless and without warning but it soon progessed and by the end the pain was worse than delivering my 10 lb DD.

Early on I was always hungrey and ate a great deal but always stayed very thin. The last 10 to 15 years before diagnosis I lost hunger. I think it was a bit of negative conditioning though. Get hungry, eat, get pain, get sick.

For a good idea of what else was going on just read my signature.

[FarmCat]

I'm new here; this is my first post. I'll do an introductory one elsewhere soon. In the meantime I wanted to respond here.

Your problems with always being hungry again an hour after you eat, and getting "hunger headaches," sound a lot like hypoglycemia. That was my FIRST food-related issue to surface, years before I was aware of any specific food intolerances. Hypoglycemia means you over-react to sugar and starch, make too much insulin, and then your blood sugar bottoms out and you have to eat more. It's a vicious cycle. It sounds like your diet is heavy on the bread and noodles, which would be aggravating it.

I don't have time to do a long post now, but here's a couple of quick rules to begin balancing your blood sugar out.

* Every time you eat something, include some protein.

* Eat small meals, frequently. Try to time things so that you eat BEFORE you start to feel your blood sugar drop. Stop the roller coaster.

* Cut out or way down on all the refined sugars and starches (the bread, pasta, potatoes, candy, sweet deserts). Eat lots of low-starch veggies. Not sure what else specifically to recommend, with the list you gave of things you can't eat.

You may feel worse at first as your system adjusts to not being fed starch all the time. In my case, I also eventually figured out that my food intolerances were making my hypoglycemia much worse. Once I got rid of soy and a few other things my blood sugar stayed much more stable.

I'm not saying you don't have celiac disease and/or other food intolerances; multiple problems are very common. But trying a hypoglycemic diet may be a place to start.

A good book to start learning more is Hypoglycemia: the Disease Your Doctor Won't Treat by Geraldine Saunders.

Good luck figuring out your symptoms!