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I Have A Question About Celiac Diease....

Trina7020

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Trina7020 Newbie
Trina7020
Posted

I have felt awful for over a year.... My biggest complaint was exhaustion and fatigue to the point I couldn't function... which led to depression and irritability and other stuff my husband loves... lol... I finally went to the doctor a year ago... and was diagnosed hypothyroid and they sent me to and endocrinologist because they said I had thyroid antibodies... and the number kept growing... but the endo said those are no big deal. ??? My thyroid levels have now been normal (with medication) for over a year... but the exhaustion never went away.

I found I was gaining weight really quickly... 50 pounds in about 5 months... but I know my activity level went down ALOT because I had no energy. I have always struggled with constipation... more so extremely large and hard stools that embarrassing clog the toilet every time. In fact I take 2 colace nightly and it only minimally helps. Then about 4 months ago while the exhaustion was getitng worse... I had a new symptom... edema in my feet and lower legs... and occasionally in my hands and face... but my feet/legs were always worse... I was also getting migraines pretty regularly...

I finally went to the doctor in tears... and said please figure out what is wrong with me... they ran some basic blood work and check my thyroid, and kidneys, etc. Nothing was abnormal....

So then they need a bunch of heart tests... chest Xray... EKG.... Echo... all normal... I would eventually be sent to a cardiologist who would "rule" this is not heart related...

I had a brain MRI... I had a Venus Doppler on my legs looking for clots...

Finally I had a Lupus test...

Everything was completely normal...

So a friend suggested I try to go gluten free... thinking of celiac.... I had never heard of it... so I read a little and decided what can it hurt? So I worked really hard at being gluten-free (which is really hard b/c I am a picky eater!) but only made it a week... while I wasn't back to normal I did seem to have a bit more energy... which I know that it takes a long time to feel better... but what was amazing to me it that within 48 hours this persisant and painful swelling I had had for 3 months was just gone... Well last night we went to a ball game with our kids and I let the gluten-free diet go.. and I have large amounts of no-no items... and this morning... you guessed it... swollen like a balloon...

Do I call the doctor with the information? Could it be a gluten intolerance? Celiac? I have spent literally thousands on tests the last few months... I feel like the doctor thinks I am making up symptoms... although she personally has seen the pitting edema... I am not sure what all this means and if something related to gluten could causing it... it is hard to believe that a couple of hours of bad eating can cause all this swelling...

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ang1e0251 Contributor
ang1e0251
Posted

Go back to eating gluten and have your dr run a complete celiac blood panel. Explain to her your experiment and how your body reacted. After you have the blood work, come back & post the results. If they are positive, your dr should send you to a gastroenterologist for an endoscopy. If they are negative, post them here so someone can interpret them for you. Sometimes a second opinion can show a new perspective.

Foxfire62 Newbie
Foxfire62
Posted
I have felt awful for over a year.... My biggest complaint was exhaustion and fatigue to the point I couldn't function... which led to depression and irritability and other stuff my husband loves... lol... I finally went to the doctor a year ago... and was diagnosed hypothyroid and they sent me to and endocrinologist because they said I had thyroid antibodies... and the number kept growing... but the endo said those are no big deal. ??? My thyroid levels have now been normal (with medication) for over a year... but the exhaustion never went away.

I found I was gaining weight really quickly... 50 pounds in about 5 months... but I know my activity level went down ALOT because I had no energy. I have always struggled with constipation... more so extremely large and hard stools that embarrassing clog the toilet every time. In fact I take 2 colace nightly and it only minimally helps. Then about 4 months ago while the exhaustion was getitng worse... I had a new symptom... edema in my feet and lower legs... and occasionally in my hands and face... but my feet/legs were always worse... I was also getting migraines pretty regularly...

I finally went to the doctor in tears... and said please figure out what is wrong with me... they ran some basic blood work and check my thyroid, and kidneys, etc. Nothing was abnormal....

So then they need a bunch of heart tests... chest Xray... EKG.... Echo... all normal... I would eventually be sent to a cardiologist who would "rule" this is not heart related...

I had a brain MRI... I had a Venus Doppler on my legs looking for clots...

Finally I had a Lupus test...

Everything was completely normal...

So a friend suggested I try to go gluten free... thinking of celiac.... I had never heard of it... so I read a little and decided what can it hurt? So I worked really hard at being gluten-free (which is really hard b/c I am a picky eater!) but only made it a week... while I wasn't back to normal I did seem to have a bit more energy... which I know that it takes a long time to feel better... but what was amazing to me it that within 48 hours this persisant and painful swelling I had had for 3 months was just gone... Well last night we went to a ball game with our kids and I let the gluten-free diet go.. and I have large amounts of no-no items... and this morning... you guessed it... swollen like a balloon...

Do I call the doctor with the information? Could it be a gluten intolerance? Celiac? I have spent literally thousands on tests the last few months... I feel like the doctor thinks I am making up symptoms... although she personally has seen the pitting edema... I am not sure what all this means and if something related to gluten could causing it... it is hard to believe that a couple of hours of bad eating can cause all this swelling...

There are so many different symptoms for celiac disease...don't just believe the typical ones.

Have you had your iron levels tested? That could explain exhaustion. But the constipation could possibly do that too, because this can potentially make the intestines and heart work harder making you more tired.

Get a full celiac blood panel immediately. In order to be diagnosed as celiac, you need to stay on a gluten diet. That's why it's important to get this done quickly. But you'll also have to be biopsied (small intestine) which is the only sure-fire way to diagnose. Then, if diagnosed with celiac disease, you'll need to go on a gluten-free diet immediately. Depending on the severity of intestinal damage, it can take 1-2 years for an adult's intestines to heal from the effects of gluten. However, you should start feeling a little better within the first month.

I am also dealing with constipation right now. On Sunday, I felt great after taking away all proteins from my diet (no fats...just veggies, salad and fruit). I now know that protein is causing me backup. But because I can become hypoglycemic, I have to be careful and still include protein. Maybe processed foods, excess calcium intake or meats/protein is causing you constipation like me. Try going on a gluten-free veggetarian diet for a day or two after diagnosis, and see if that will help with your constipation. Since greatly reducing my protein intake, I now have a daily BM. I'm still not perfect, however.

And although they often say weight loss is a sign of celiac disease, I had weight gain. Go figure.

But please get tested immediately! It's very important!

Good luck!

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