Help I'm Sick!

[IndigoRose]

For the past 5 years my health has been declining, I have been passed from doctor to doctor and had test after test. I began feeling fatigue, weekness and lack of endurance, signs of 'IBS' or maybe "lactose intolorance", constipation, none of which were helped by any medications or showed anything serious on scopes or tests.

I ran a low grade fever and my white count was slightly elevated on every blood test, but no disease, they just kept telling me it was a virus! but I never got better... for 1 1/2 years until I went to the emergency room with a kidney stone and they found a tumor on my left overy! I had that removed and then proceded to pass 4 more stones...

I felt a little better but my symptoms were still present and in addition the migraine headaches that I had suffered with had increased to daily and so severe sometimes I could not even stand. I have been hospitalized several times because of them. Also my body is so acidic I have sores in my mouth despite taking Lysine 1000mg a day.

I have removed all tyrizine, MSG and soy from my diet, but am still sick. Two days ago I went to the doctor that took my tumor out and he suggested I be tested for Celiac Disease. He is an excellent doctor, (I don't say that often) but I would still like to know more about this?

My symptoms seem to fit, yet seem extreme too? Does anyone have migraines like this?

Also I am trying to go completely glutin free, it is a bit confusing, any SIMPLE advice?

I could sure use some encouragement, I have been sick for SOOOO long, I have been ready to give up!

Thank you...

[dbmamaz]

I dropped gluten and dairy 2 months ago, because i'd reacted to them as an infant, and just thought I might feel healthier, but i had no major complaints. However, all my minor complaints (headaches 4/wk, frequent bouts of fatigue, depression and anxiety, and iffy bowels) have all cleared up. I saw a woman on youtube who said she got rid of canker sores from going off gluten, and I'm pretty sure headaches are a common one.

I'm waiting on my celiac test (done after i'd been off for 6 wks, so likely to be negative), but if i can come up with any positive results, I'm going to encourage my sister to try also. She's been sick like you for years - chronic fatigue, fibromyalgia, headaches, plus hallucinations and bouts of being suicidal, more recently her hands have been swelling up and she's had fevers. My mother has been parading her past every specialist she can find in boston, and no one knows what's wrong. I'm afraid to talk to her about food sensitivities (she also has an allergy to corn, which honestly they say is harder ot avoid than gluten), because she thinks I'm a hypochondriac who's always trying to label everyone else with what I think I have.

Anyways, the simplest way to get off of gluten is to eat whole, unprocessed foods. Roast a chicken and some potatoes and steam some veggies, and eat the leftovers the next day. I was eating plain grits with a fried egg. But at first, rather than hoping various things are gluten free, just eat very plain food. Even rice crispies have hidden gluten in the form of barley malt flavoring.

However, you might want to wait until you have your dx back from your doctor, becuase if they want to do a biopsy, going off gluten now can affect your biopsy.

I sure hope gluten is your answer - so many people on this site seemed to have been brought back from death's door by dropping the gluten. Good luck!

[lizard00]

THe headaches, mouth sores and chronic fatigue are definitely symptoms/signs of Celiac. Sounds like you found a keeper for your doc!! I hope your test is soon and gives you some answers. Remeber though, they are not always conclusive, so regardless of the result, you should go gluten-free for a few weeks to see if you feel any relief. But make sure you stay on gluten until then, or you could get a false negative.

It seems very overwhelming at first, but there is a safe foods list and an unsafe list on this website, and many manufacturers are very clear, I know Kraft is great about not hiding ingredients. But at first, the easiet way is just what dbmamaz said, fresh meats, fruits and veggies. Leftovers for lunch, and then as it gets easier and you don't feel so overwhelmed, move on to different things. You'd be really surprised at how much is gluten-free. Also, if you have a whole foods nearby, they have a list of everything in their store that is gluten-free. You can print it off the internet, or they will give you a list at the service desk.

Hope you start feeling better soon!!

[IndigoRose]

THe headaches, mouth sores and chronic fatigue are definitely symptoms/signs of Celiac. Sounds like you found a keeper for your doc!! I hope your test is soon and gives you some answers. Remeber though, they are not always conclusive, so regardless of the result, you should go gluten-free for a few weeks to see if you feel any relief. But make sure you stay on gluten until then, or you could get a false negative.

It seems very overwhelming at first, but there is a safe foods list and an unsafe list on this website, and many manufacturers are very clear, I know Kraft is great about not hiding ingredients. But at first, the easiet way is just what dbmamaz said, fresh meats, fruits and veggies. Leftovers for lunch, and then as it gets easier and you don't feel so overwhelmed, move on to different things. You'd be really surprised at how much is gluten-free. Also, if you have a whole foods nearby, they have a list of everything in their store that is gluten-free. You can print it off the internet, or they will give you a list at the service desk.

Hope you start feeling better soon!!

thank you so much for your response! I am beside myself I do not know if I can still continue to eat gluten knowing this may be the cause, I have stopped eating all products for one full day now, I still do not feel great but am hoping there will be a change. I am willing to try anything! I am desperate!!!

Thank you for the SIMPLE food suggestions, they were most helpful. fresh meats, fruits and veggies. I can do that! I understand reading food labels but the gluten thing was sooo confusing and I was already so frustrated with the whole soy and soy bi-product issue.

One last question? Can I eat yogert? Drink milk? Dairy Products? Are they safe? I do not think I am lactose intolerent, I think my symptoms are from Celiac Disease.

Thank you again....

[lizard00]

The dairy thing is difficult to answer. Some people find that they need to go off dairy for a bit while they are healing. I have seen many recommendations from this site. There are also just as many who say give it a try and see how it makes you feel. If you find you can tolerate dairy products with no problem, I say go for it.

If you do find that dairy bothers you, cut it out for a while. You can always try it again a few months down the road when your body is doing better. If you've been eating dairy this long, chances are you probably aren't lactose intolerant, but if your digestive system is out of whack, lactose can be an issue until things are better. So, experiment, ask your doc, and go from there.

Hope that helped!

Liz