How Sick Were You On Gluten?

[Luisa2552]

I feel for all of you who have suffered for years without a diagnoses! How frustrating! Why isn't this disease easier to diagnose? For me it's been the last 2 or 3 years that have been a problem, but I never figured it was dietary until recently. Had never heard of Celiac disease. I was constantly fatiged. I figured this was due to a heart problem I developed after my last child was born. I was on blood pressure meds to make my heart have an easier job so I figured that had a lot to do with it. But then the cramping and bloating started and the unmentionable 'leaking' that really got me wondering. I'd have occasional D, but nothing serious. My then I fugured it was food and did an internet search and found wheat to be a huge culpret so I stopped. The leaking stopped and the cramping got better, but I continued to have a pain in my upper left abdo. That got me in and the rest is history. My antigens were positive and I go for endoscopy next week. Can't wait to get off of gluten and feel better.

[Celiaction]

Hi All,

When people ask me what are the symptoms of Celiac I say, "All of them." And certainly this is borne out by the notations in this string. I have two to add: 1) tounge swelling and mouth soreness (spicy food BURNS!, shot of Rum INCINERATES!) and 2) Eye infections (itching, swelling, white pus stings). Is there a comprehensive list of symptoms somewhere on this site?

[babygirl1234]

before i was DX with celiac disease i was very sick losing wight stomach pains, when i was 15 i could fit into kids clothes because i only weight 90lbs, and now when i cheat i feel sick to my stomach , and with pizza i throw that up,

[Ed-G]

before i was DX with celiac disease i was very sick losing wight stomach pains, when i was 15 i could fit into kids clothes because i only weight 90lbs, and now when i cheat i feel sick to my stomach , and with pizza i throw that up,

Ahh, the memories...at that age I was 85 pounds. But I never really had the abdominal pain.

Ed in MD

[melrobsings]

Every time I ate I would be doubled up in pain and spend HOURS in the bathroom. Sometimes I would be in so much pain i would see black spots and would put myself to bed and wake up a few hours later covered in hives, not to mention i would be in a horrid mood and refuse to speak. I bloat like you can't believe and get very spacey and can't focus as well.

[Teacher1958]

One thing that really struck me about a lot of these replies is how many of us thought that D was a normal part of living. I know I bought into it for years with my 'I Be Stupid' diagnosis. I still wish Immodium was a prescription med, maybe if our doctors listened and knew how much OTC meds we really were taking to control our 'normal' D we could get diagnosed a bit sooner. Many doctors I believe think we exagerate symptoms when what many do is the opposite. I did not know until months after diagnosis that waking up at night with D is not IBS, something my regular doctor never said, he just pushed more antidepressants and valium.

I asked for reassurance from more than one doctor, and they told me that the IBS was harmless and would not damage my digestive tract. That makes me so angry. I had pain so bad that I was doubled over and would have D until there was nothing left inside me. I would be so exhausted afterwards and so sore. I can't believe that I had to figure this out myself. I'm having a colonoscopy on Monday and am hoping that everything is okay.

[TexasJane]

I agree. I was angry at first but when I realized I could finally be healed by this diagnosis I was ecstatic. I have had problems since 1964 with all sorts of digestion problems,now end up with B 12 deficiency, Neuropathy. anemia, low platelets, stomach problems,teeth problems, all the usual symptoms but no one found it until I went to get a cancer taken off my face (which was not cancer after all). the Dermatologist saw the lesions on elbows and knees and wanted to do a biopsy. He called me soon and said it was positive for DH and for me to see my doctor. I did and he ordered a biopsy of the small intestine. I just think of all that money and time and pain that has occurred over this many years that could have been avoided. I am glad that they can finally know how to look for this disease. Let us hope that it will become a routine test for all those others who have it and don't know.I might add that at the same time the lesions appeared I got a mouth full of what we thought was yeast infection. I could not eat anything without it burning.The lesions then appeated in my ears, my hair, and it seemed that I itched all over, but it only lasted a few weeks. Now though when I eat gluten I start itching all over again. I'm one of those mothers who always cleaned up the plate of what my kids left. So it is a hard habit to break not to eat a bite of this or that. When I forgot and ate a bite of banana bread I made for guests I was sick all night. I guess when it finally appears it only takes a little to make you sick. Does it cause hot flashes? I have been to several doctors for that and they say do not take the hormone. I am 66 and you'd think I would be over that but I have them all the time and they are bad.