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Newbie With A Long List Of Symptoms

Kitty Marmalade

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Kitty Marmalade Newbie
Kitty Marmalade
Posted

Hi everyone

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nvsmom Community Regular
nvsmom
Posted

You definitely could be celiac... You have more symptoms than I did. I would push to get tested if I was you. The more common tests are tTg IgA, IgA, and EMA. There are more to complete the full panel so you might want to look into that.

Don't start your gluten-free trial period before you get tested or it will affect your results.

Good luck! I hope you find answers.

eatmeat4good Enthusiast
eatmeat4good
Posted

Many people didn't test, went gluten free, and have never regretted it. Other people went gluten free, regretted not testing, and tried to eat gluten again for the testing and found they were unable to tolerate gluten long enough to complete testing. Your decision depends on what kind of person you are. You are the only one who can decide if testing is important to you or not. I didn't test. I could only resist going gluten free for about 24 hours after I found this site, and the name of the disease that matched all of my symptoms. And the key to remission was in my hands? Heck no, I didn't need a Dr. to tell me I had Celiac disease. There is a phrase people often use here. You don't need a Dr.'s permission or prescription to go gluten free.

Your symptoms definitely match Celiac disease.

Now to decide if you need the test or if you want to just go gluten free.

If you stay on gluten and test negative, you should still give the gluten free diet a strict try. Many people test negative and it is a false negative. Something like 30% are false negatives. So being gluten free may still be in your best interest.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I say push for testing! You have many of the symptoms, and quite a few can be the result of malabsorption causing vitamin/mineral deficiencies.

Don't go gluten-free or gluten lite until you have been tested, if you decide to pursue it. As others have said, about 20-30% of us test negative in our blood work, so if you get a negative try the gluten-free diet for at least 3 months and see how you do?

If your primary care Dr. won't order the testing..do you need a referral to see a GI?

Kitty Marmalade Newbie
Kitty Marmalade
Posted
  • Author

Thanks for your replies!

Bubba's Mom - I am not sure if I need a referral or not. I recently broke a bone in my foot and was able to see a podiatrist without one, so I assume no. I have crappy insurance that doesn't pay for much beyond two office visits a year.

What about home testing? I've seen Enterolab and CeliacSure mentioned on the boards - what experiences have you had with them? I'm just weighing my options in case my doctor refuses to test me - again - and the GI doc option doesn't materialize.

Regardless of what happens, I've been giving a lot of though to trying the diet and see what happens. I've got a target date of October 1 in mind - most family birthdays and my vacation will be over by then, so I won't have any special occasions to contend with, the lone exception being my nephew's birthday. But I'm on Weight Watchers so I shouldn't be eating cake anyway. ;) I bought a couple of gluten-free cookbooks and found a couple of really good blogs about gluten-free cooking. I guess it's a good thing I like to cook!

GFinDC Veteran
GFinDC
Posted

Hi Kitty,

You sure sound like a celiac to me. Your doc is off in la-la land if you ask me. To refuse to test you with the symptoms you have is ridiculous. Some doctors don't believe that people who are overweight can have celiac disease, maybe your is one of them. That's wrong thinking and totally incorrect. Celiac may actually cause some people to gain weight. That's an area I don't think has been studied much though. Low thyroid hormone can cause weight gain too, due to slowed metabolism. The reason to get tested for Hashimoto's Thyropiditis is to know for one, and also because Hashimoto's is associated with celiac disease. You are more likely to have Hashimoto's if you have celiac and are female. And the treatment is not the same, the first thing to do if you have both is to go on a gluten-free diet. The gluten-free diet may not stop the thyroid attack but will help your body absorb vitamins and minerals it needs to repair damage in your body. the Hashimoto's test is for TPO antibodies.

Since celiac can cause nutritional deficiencies like low vitamin levels, it would also be helpful to get testing for those levels. That's another indicator of possible celiac disease actually. That may have had somethinog to do with your broken bone. Celiacs often have low D and B vitamins and several others too.

There is a doctors section of the forum that may help you find a good one in your area.

And welcome to the site! :)

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thanks for your replies!

Bubba's Mom - I am not sure if I need a referral or not. I recently broke a bone in my foot and was able to see a podiatrist without one, so I assume no. I have crappy insurance that doesn't pay for much beyond two office visits a year.

What about home testing? I've seen Enterolab and CeliacSure mentioned on the boards - what experiences have you had with them? I'm just weighing my options in case my doctor refuses to test me - again - and the GI doc option doesn't materialize.

Regardless of what happens, I've been giving a lot of though to trying the diet and see what happens. I've got a target date of October 1 in mind - most family birthdays and my vacation will be over by then, so I won't have any special occasions to contend with, the lone exception being my nephew's birthday. But I'm on Weight Watchers so I shouldn't be eating cake anyway. ;) I bought a couple of gluten-free cookbooks and found a couple of really good blogs about gluten-free cooking. I guess it's a good thing I like to cook!

I don't have any experience with Enterolab or CeliacSure, but some here have used Enterolab.

If your Dr. won't test you, or if you get tests and it comes back negative, give the diet a good 3 month try? Rather than use gluten-free versions of things, it's best to eat whole foods, like fruits, veggies, meats, eggs and fish at first to avoid any problems with very low doses of gluten or cross contamination.

I was skeptical about kale chips replacing potato chips, but they sure grew on me! (kale leaves torn into bite sized pieces, tossed with olive oil and a sprinkle of salt and roasted in the oven)You can eat all you want..they're so low in calories/carbs. :D

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