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My Dr. Says I'm Not Cd

motorchicked

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motorchicked Newbie
motorchicked
Posted

My name is Karen, I live in the Kansas City area. I was glad to see an article in Whole Dog Magazine by a vet who has Celiac Disease, who also prescribes no grains at all for dogs, which means home-made dog food. He said dogs with allergies and some with seizures have had much better health when they are not fed grains.

He described the symptoms, explained about the villi. He said to go gluten-free and that most celiacs also have a dairy problem too. I recognized symptoms I've had for the last 3-4 years of heartburn, gas and digestive upsets, diarrhea. I am 53 years old almost and was wondering if I was going through menopause but the DR. said not yet according to the blood-work.

I have been trying to find a solution to this but have not been to the doctors because I didn't have health insurance until last fall, and then I was afraid to go for fear they'd say I had a preexisting condition. I finally called and they said it's ok - no preexisting condition riders. good.

So I went to a DR. I have never seen before. She's young. I told her I wanted to be tested for celiac disease. I had started eating without gluten for two weeks before, then I read the site and started eating it again 3 days before the DR. visit. (I have tried to give blood at a few times in my life and they wouldn't let me because they said I was anemic. )

I can go pick up the tests form the DR. But the nurse said these tests were done using Lab One:

IgA ....normal, they didn't have any numbers on it.

Thyroid ...normal.

CBC red and white-cells.... normal. all basically normal.

Inflammation ...normal.

Testosterone and Testosterone Free: the T.-Free was elevated. Dr. wants to repeat these tests.

DR. wants to do a DHEA test too.

So as I sit here and have been eating grains and everything... my gut hurts. I woke up last night and my gut hurt. I've had diarrhea a 3-4 times for the past week of so. Didn't have it when I was eating no grains for 2 weeks.

What am I to do? I am not thin, I am overweight. I'm about 5'3" and 200 lbs. When my tummy hurts, I usually eat something even though it is a temporary fix.

I tried Prilosec but still had stomach pains and diarrhea so I quit it after 3 weeks. Doctors seem to give that stuff without determining whether you have too much or not enough hydrochloric acid to digest. I always tried to eat early before going to bed but the food just wouldn't digest...and I'd wake up with heartburn. Prilosec shuts off the pumps, so if you didn't have enough in the first place, can you ever digest the food?

I just want to be healthy. I just started back to Jazzercise, which I love. But it does seem like plenty of times I don't have enough energy to do regular stuff. And I have been depressed. Seems like I keep thinking it's going to get better but other things keep happening. And I seem like I am getting arthritis. I really don't have allergies, except to nickel and I get sun poisoning. I'm not taking any drugs except Ibuprofen once in a while...like now because my back has been hurting in about three places.

Arrgh. I guess I could have a wheat allergy. Don't know of any forums on that. I have done searches for diarrhea and looked around lot, and hoped this would be it. I'm afraid I will get diabetes (type 2) like my mom and dad and sister (and now my brother who just got it, but he now has small cell cancer for the 4th time and is in hospice with a few weeks or more left.)

Anyone have a web site they can direct me to in order help with digestion problems when a person does not have celiac disease?

Thank :)Karen

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KaitiUSA Enthusiast
KaitiUSA
Posted

You went without gluten before testing? Going on gluten 3 days before testing is not enough. That alone can cause tests to come back negative. What tests for celiac did they do? There are some that are more specific than others.

Weight gain can come with celiac as well and so can anemia which you are describing. There are over 200 symptoms with celiac and everyone can have different symptoms..some don't get symptoms at all.

You could have a gluten intolerance but not be a celiac. But you don't have a fair reading on your celiac test so you don't know for sure.

You should get these tests done for celiac:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

If those come back negative then you may want to get York testing done which tests for intolerances.

Also Enterolabs are a good thing for detecting celiac as well. It does not require you to get back on gluten either. Here is their site where you can get more info. They also do a gene test to see if you are predisposed to celiac.

Open Original Shared Link

As far as your stomach problems go I would highly recommend finding a good probiotic and some good enzymes. They are very essential in digestion and promoting a healthier immune system. They will help with indigestion and other problems that can come from food. You should also be on a very good vitamin.. I prefer liquid ones myself. Celiac or not these things will be helpful.

Good luck with everything :D and let me know if I can help at all....if you have any questions I am sure one of us can help you ..you came to the right place :D

kabowman Explorer
kabowman
Posted

I told my docs that I refused to go back on gluten after being gluten-free for 3-4 months for a EGD. I do NOT have a formal dx and a lot of people on this board to NOT.

There are things you can do, try an elimiation diet (just PLAIN meat and PLAIN veggies, PLAIN potatoes, and PLAIN rice) - salt & pepper should be OK. Anyway, after a week of that, add in dairy then OK to eat, if no reaction, add in soy, if no reaction then OK to eat, etc. but pay attention to what is in each thing that you add. I also kept a food diary through this process to document what foods trigered which reactions.

I discovered that yeast, in any form, causes me to run a fever and totally "knocks me out" for several hours then I feel drugged fopr days. Most of my joint (not all - the doc suspects RA) is now gone, etc.

Just because you don't have a formal dx, should NOT prevent you from feeling better...read my sig.

Good luck and welcome...feel better.

kabowman Explorer
kabowman
Posted

Oh, one more note, my new PCP who suspected celiac disease also ran all the tests for thyroid, lupus, basically almost any blood test you can run and the only thing she discovered is I may develop diabeties - now am pre-diabetic.

motorchicked Newbie
motorchicked
Posted
  • Author

Thank you for your reply and help. My stomach hurts so much right now. I want to do something. dont know what. Which probiotics do you take?

Thanks too for the lab link. It looks like I coudl find out what's wrong with me, wiht enough tests anyway. I don't have any idea whether or not my insurance will pay though. And first I may need to educate my Doctor.

I had the test for this done by my Dr: Anti-Endomysial (EMA) IgA it was normal.

:)Karen

motorchicked Newbie
motorchicked
Posted
  • Author

Thanks for sending your comments everyone.

I am feeling a little teary right now.

I'm glad to know others tests did not come back positive but they went gluten-free and it turned to be the right thing. I guess a diagnosis would feel good for when family and hubby think I'm just making a big thing out of this.

Oooh tummy hurts.

I'll keep reading you keep writing.

Thanks so much.

Laying down now.

Karen

plantime Contributor
plantime
Posted

The tests you posted do not appear to have much to do with celiac, except the IgA. Ask your doc's office for the numbers on the IgA test. What one lab considers normal another says is too high or too low. I got my formal diagnosis by accident, I was originally diagnosed by positive improvement on a glutenfree diet. Usually, for the blood tests to come back positive, you have to have a certain amount of damage to your intestines. It could be that the damage you have is just not severe enough. Kaiti listed the most common tests, ask your doc to run them. It is possible to have negative bloodwork and still have Celiac!

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KaitiUSA Enthusiast
KaitiUSA
Posted

I take Enzymatic Therapy probiotics and enzymes..they list right on the bottles what they are free of which is convenient for me :D They will help with your problems whether you are celiac or not...my parents and some family members take them, some of which are perfectly fine and others who have had problems...everyone loves them. Good luck :D

ianm Apprentice
ianm
Posted

I am another self diagnosed and there is no way in hell I will ingest gluten to get tested. I was so sick for 36 years before I found out what was wrong. I went to dozens of doctors and not one ever suggested celiac. They just wanted to write me lots of prescriptions which I refused or threw away. The past 14 months of no gluten have been the best of my life. I had serious weight gain problems before going gluten-free. I still want to lose 10-15 pounds but I'm at an acceptable weight right now.

I discovered what the problem was when I tried the Atkins diet. There is a chapter on food allergies in the Atkins diet book. Grain is forbidden during the first two stages of the diet and I was able to finally figure out what was wrong. Since you have tried eliminating grain and it helped then you should continue down that path. Lots of good info and people here.

Ianm

stargirl Apprentice
stargirl
Posted

I also do not have a formal diagnosis but was able to find a gastroenterologist who listened to me and agreed that my symptoms and family history fit with celiac disease. He did not ask my to go back on gluten after being off for four months and formally included the diagnosis in my medical record. Good luck with diagnosis, try not to get too discouraged.

motorchicked Newbie
motorchicked
Posted
  • Author

Whew! I feel better this morning, only a back ache, but I'm not complaining. I had some pysilluim husk in water and I think that really helped after a while anyway. I'm so glad to find a forum to talk about tummy problems, whether or not I really have this. At least I may get to the bottom of this. I am going to proceed like I have celiac. But guess what? I won a $5000.00 cruise that my hubby and I are scheduled to go on April 9th-April17th. I am worried about eating. Don't want to go on a great cruise and be doubled over with gas pain. Have you all ever used Metamusil or 100% pysilluim husk and had it work pretty well? How about Immodium? Did you still leak?

Stargirl, what is your family history? No one is my family has it as far as I know. Although my younger, very overweight sister with diabetes and a lots of hormone problems and takes various heartburn OTC drugs, and sleeps sitting up. She and my mom and dad will get up and eat in the middle of the night. That would kill me, I'd pay for that one. My grandma had GERD. My dad was always constipated, and so was my brother. Plugging up the plumbing, that sort of thing. I have done that too. Constipated or diarrhea. Aargh.

Ianm, yeah I'm not big on Doctors who only know about drugs and nothing about prevention. Veterinarians are the same way. I read they get an hour of nutrition in their studies, from Science Diet people no less. Talk about conflict of interest!

Plantime, that is a totally good point! I may not have enough damage to my intestines yet. I think I'll have to educate the Doctor in order to get more tests. But really, after this little episode, I'm not wanting to eat grains. and I'm not one to turn down food. But now I'm looking at it, thinking....oooh it's gonna hurt.

I did Atkins, it was hard to be completely without grains. I should have written the food down along with when I had problems, but I think I was ok.

I went to the Doctor's office and picked up the blood report. I've looked at a bunch of these because I do them all the time on my dog, Zoe, a mini bull terrier. I read on a dog list, it's funny but lots of times the dog will mirror the owners problems. I know it's true in my case and another person with the same kind of dog. She has the worse allergies to everything ever. Cannot handle carbohydrates at all. Neither can her mini bull terrier dog. But then it's common for those dogs to have all kinds of problems. And it's getting more common for people too, I've read.

Here's what the LAB ONE test says:

oops. Will post again later. Have to work.

Karen

Darn wheat (rye & barley)! :)Karen

luvalble54 Newbie
luvalble54
Posted

just a quick sidenote - i wouldnt use Prilosec to treat stomach/intestinal distress like this - its really just for GERD. it might just make it worse, so unless it's just heartburn - stay away from prilosec. prilosec can cause upset stomach to begin with. from a pharm tech/students perspective, it might make you feel better if you stick with simthecone and anti-diarrheal meds instead.

best of luck

stargirl Apprentice
stargirl
Posted

Hi Karen. Both of my mother's sisters are diagnosed Celiacs, one after being sick for five years and living with a feeding tube. My father's mother is an undiagnosed celiac. All my heritage goes back to eastern European. I'm half Irish and overall just a pale white gal. My doctor listened to my symptoms and was very understanding, he actually believed me. It was a first and highly appreciated. I encourage you to keep looking around for a doctor who will listen to you and not fight you. Maybe you can find Celiacs in your area who could give you a recommendation? I live in California, not too far from LA.

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