Desperately Seeking Diagnosis

[Treowe]

Having taken my elderly mother from specialist to specialist with no result, I saw the symptoms of Celiac in a magazine article and they sort of rang a bell. I have a call in to her primary dr but thought maybe I could get some feedback here.

She complains of a 'burning' sensation under her skin

Diarrhea

Sudden 'redness' on face or hands, usually unilaterally

no appetite

deep depression, ie., no interest in anything

head is in a 'heavy fog'

dry mouth

dry, cracked skin

bottom of feet feel swollen to her

Does this sound familiar to any of you? Should I pursue this as a possible diagnosis or am I barking up the wrong tree?

thanks in advance

[lovegrov]

Diarrhea, depression, brain fog, and fatigue are among the more common symptoms of celiac. Of course they also apply to many other conditions. The other problems would not be as common to celiac.

If the doctors can't find another reason, then what's to lose by testing for celiac (other than some cash of course)?

richard

[Treowe]

Thank you. I have an evaluation scheduled in 2 weeks. It would be such a relief to find out what is causing her problems, perhaps this is it.

[Nantzie]

You could also explore the possibility of food intolerances in general. A lot of us here don't actually have celiac, but have found through taking gluten out of our diets that gluten causes serious problems, even though we don't have the intestinal damage that = celiac.

Personally, if I eat gluten, I get horrible headaches, nausea, stomach cramps, "brain fog", depression, anger, anxiety, insomnia, I ache all over, disinterest in doing anything, very sleepy, itchy all over, super irritable.

But my blood tests come back normal. One of the blood tests indicates whether there would be damage found in the small intestine if they were to do a biopsy. So if my blood test was negative, the biopsy would most likely also be negative. Negative blood tests + negative biopsy = negative for celiac.

BUT...

Since I went ahead and gave gluten-free a shot just to see, it's obvious that my body does not get along with gluten at all. If I hadn't tried it, I never would have known.

There are other common, everyday foods that people have awful problems with too. Soy, eggs, dairy and corn are also common for people to react negatively. Soy can really sneak up on you because they put it in practically everything now. So you can be getting a huge amount of soy in your diet without even being a "soy person." There are a lot of people on here who have some of these other intolerances as well as wheat.

If celiac ends up not being a diagnosis for her, I really hope you consider consider doing an elimination diet, and then one by one add things back in to maybe identify what the problem is. Your mom's doctor should know how to do this. Basically, you go back to eating a few plain things, like chicken, rice, potatoes and veggies until you start feeling better, then add things in one by one. It's almost like what you do when you start babies on food; how the doctors tell you to try one item for a few days, then if they don't have any problems, try another item. For me, it only took a couple of days for me to feel like a completely different person. It can be really quick.

Food intolerances are really awful things to live with because it just seems like you're always sick and you have no clue what could be causing it because it seems like no matter what you eat or don't eat, you get sick. I mean, unless you know about it, who would possibly think they could get so sick from wheat of all things?? And when you think about it, what have moms all over the world for generations given their kids when they have upset tummies? Chicken noodle soup, dry toast, crackers. Ugg...

Once you know what your particular problem foods are, it's like you're living a whole new life. It can be a long road to figure it out, but it's well worth the journey.

I hope that this is the beginning of a healthier life for your mom. I'm glad you guys found us here.

Nancy

[Treowe]

Thanks Nancy. That was really helpful. I'll discuss this with her Dr when we see her. It's so difficult, as she has always been physically active, and right up until 1 1/2 years ago she was power walking miles every day. She's 81 and miserable every day now. I hope we can figure out if it is a food allergy of some kind.

[Jnkmnky]

You could also explore the possibility of food intolerances in general. A lot of us here don't actually have celiac, but have found through taking gluten out of our diets that gluten causes serious problems, even though we don't have the intestinal damage that = celiac.

Personally, if I eat gluten, I get horrible headaches, nausea, stomach cramps, "brain fog", depression, anger, anxiety, insomnia, I ache all over, disinterest in doing anything, very sleepy, itchy all over, super irritable.

But my blood tests come back normal. One of the blood tests indicates whether there would be damage found in the small intestine if they were to do a biopsy. So if my blood test was negative, the biopsy would most likely also be negative. Negative blood tests + negative biopsy = negative for celiac.

BUT...

Since I went ahead and gave gluten-free a shot just to see, it's obvious that my body does not get along with gluten at all. If I hadn't tried it, I never would have known.

There are other common, everyday foods that people have awful problems with too. Soy, eggs, dairy and corn are also common for people to react negatively. Soy can really sneak up on you because they put it in practically everything now. So you can be getting a huge amount of soy in your diet without even being a "soy person." There are a lot of people on here who have some of these other intolerances as well as wheat.

If celiac ends up not being a diagnosis for her, I really hope you consider consider doing an elimination diet, and then one by one add things back in to maybe identify what the problem is. Your mom's doctor should know how to do this. Basically, you go back to eating a few plain things, like chicken, rice, potatoes and veggies until you start feeling better, then add things in one by one. It's almost like what you do when you start babies on food; how the doctors tell you to try one item for a few days, then if they don't have any problems, try another item. For me, it only took a couple of days for me to feel like a completely different person. It can be really quick.

Food intolerances are really awful things to live with because it just seems like you're always sick and you have no clue what could be causing it because it seems like no matter what you eat or don't eat, you get sick. I mean, unless you know about it, who would possibly think they could get so sick from wheat of all things?? And when you think about it, what have moms all over the world for generations given their kids when they have upset tummies? Chicken noodle soup, dry toast, crackers. Ugg...

Once you know what your particular problem foods are, it's like you're living a whole new life. It can be a long road to figure it out, but it's well worth the journey.

I hope that this is the beginning of a healthier life for your mom. I'm glad you guys found us here.

Nancy

I agree. I'm neg for celiac disease, but experience severe symptoms of what was dxed as endometriosis. Since my son was dx with celiac disease, I tried eliminating gluten to see if it would help...option #1 was a regime of motrin and vicodin!!!! *dr. prescribed!*. First month gluten free, I was pain free! Shocking. I ate gluten, I had pain. I abstained from all gluten.... I was pain free. Crazy. Fact is, my dr dxed me with Endo and admitted in the same breath, that drs don't know the cause or a cure for Endo. When I told them I was gluten free and pain free, one dr said it was a fluke, the other said it could be a real solution. They just don't know enough. The trick to seeing if gluten is a health issue, is to be 100% gluten free. NO accidents or your efforts will be wasted with questionable results.