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Tested For Celiac... What Now?

Tripletmomma2000

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Tripletmomma2000 Rookie
Tripletmomma2000
Posted

I had to go to my OB/GYN for my regular annual appointment, and she asked me how I had recently lost 70 pounds. I told her that I've been doing Atkins, but that I've noticed something strange... that when I have a "reward" meal every two weeks of pizza and beer, that I've been having weird things happen: Sudden onset of fatigue within 15 minutes of eating/drinking, literally having the wind taken out of my sails, gastric reflux, diarrhea, bloating, ungodly weight gain (always up 15-20 pounds the next morning) headache, malaise, etc. She asked if I've donated blood in the last few years, and I told her that I've tried, but have been turned down each time because of anemia. She decided to have my thyroid tested, and have me tested for Celiac Disease.

She called me today, and told me that my test came back as a 6.4, or, in her opinion, a transient positive. She said that although the test I had done was usually >7, but that there's a school of thought out there that she subscribes to that it should be a >5. I haven't really eaten gluten products since December except for once every 2 weeks. The morning of the test I had some white toast, and right before I left for the test I ate a bagel.

I understand now that I probably should have been eating gluten products for at least a few weeks before taking the test. How many days in a row should I eat gluten before having that particular test taken? (not sure of the name... transglutamine IGA or something therebouts) I plan on seeing my regular Internist tomorrow, and see what he has to say about this.

Any suggestions about what I should talk to my internist about? Do I have to have an endoscope verify the dx? Should I just forget seeing a Gastrointerologist (my OB said I should go see one) or is it important that I should? What if I just ate Gluten free... will that keep this disease at bay?

As you can see by my username, I have triplets... should THEY be tested? One of my three just isn't the same size as the other two... he's smaller and skinnier?

Thanks for helping a noob!

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Lisa Mentor
Lisa
Posted

Welcome

If you have been reading here, you may have learned the the most conclusive diagnosis is positive dietary results. A blood test can rule Celiac in, but it cannot rule it out. As well with an endoscopy, as it can be patch and may miss some indications of Celiac. An endoscopy can also determine the level of damage done to your intestines.

I can't help you with your number because I am not familiar with it. My blood test was negative after being gluten free for two months.

I would read here as much as possible and then come to a conclusion as to how you want to proceed.

I am certain that other will respond. I am sure that you are a little over whelmed at the moment.

Jestgar Rising Star
Jestgar
Posted

You can just go gluten-free, although everyone has a different opinion on whether or not this is the best first course. You could also make the whole house gluten-free, it would be easier on you and you could judge for yourself if it helps your kids.

Tripletmomma2000 Rookie
Tripletmomma2000
Posted
  • Author

Dietary results... well, I certainly feel like a completely different person when I'm on Atkins. First and foremost, it's my energy levels and sleep quality. I generally eat the same thing each day: 3 scrambled eggs with a sprinkle of grated cheddar, 1 cup of coffee with liquid splenda and calorie countdown milk, for lunch I'll have homemade plain yogurt, and for dinner I'll have broiled chicken breasts with green beans. I might have some Carb Smart ice cream if I'm still feeling hungry. For drinks, I generally have flavored seltzer. I'll eat those particular meals for 13 days in a row, and then I'll eat what I want for the 14th day. This diet is what exploited the problem, because by the end of that "cheat" or "reward" day, I'd feel like I got hit by a truck, and have reflux (don't have it otherwise) sleep horrible, gain weight, diarrhea for the next 2-3 days, exhaustion, etc.

I had also found that if I let myself have a slice of rye bread during the 13 days "on" the diet, I would present with diarrhea within a few hours.

So... I'm guessing that my dietary results *really* show that there's a gluten problem.

To think, I have a recipe using "Vital Wheat Gluten" to make "Gluten popovers"... the damage I could have done!

Jestgar Rising Star
Jestgar
Posted
To think, I have a recipe using "Vital Wheat Gluten" to make "Gluten popovers"...

Just the thought sends chills down my spine!

Nantzie Collaborator
Nantzie
Posted

The fact that you've been gluten-lite for such a long time and still came up with borderline results says a lot. That AND the response you have now to gluten? I say - welcome to the board. Make yourself at home.

Testing for kids is even more inconclusive than testing for adults. I'd also suggest the whole family go gluten-free so you can see who responds similarly to the diet and who doesn't.

Nancy

Tripletmomma2000 Rookie
Tripletmomma2000
Posted
  • Author

I went to my Internist today, and he was able to pull up my results (I stay within the same hospital network, and all my info. is centralized) and we talked for a little while, and he feels that we can take that 6.4 as a positive result, and that's that. He mentioned that Atkins, while light on gluten, is really only about 75-80% gluten free, and that I need to go all the way now, and follow a gluten-free diet. He agreed with me that an endoscopic test result will only cement what the blood work says, and that since I don't want any type of invasive procedures (including the scope) that he'll stand by the results of the blood test, and my chart now includes Celiac Disease along with my PCOS.

I'll be printing out all the "don't eats" from this website, and start weeding out the pantry. Hubby says he'll keep the foods he wants from that pile, and store them in the garage, so that there's no gluten in the house.

Thank you Nantzie, Jestar, and Momma Goose for replying to this thread, and help guide me to the "light" :) You'll all be seeing much more of me!!

Karen

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Nantzie Collaborator
Nantzie
Posted

You're welcome. We're glad to have you. :)

You've got a smart hubby to keep the gluten stuff in the garage. Just remind him to be careful not to get crumbs on his clothes and wash his hands when he comes in. My husband eats gluten sometimes for lunch at work. There have been a few times he's brought gluten home, but he always eats it outside. It's worked out fine.

Nancy

Ursa Major Collaborator
Ursa Major
Posted

Karen, you've got one of the few good doctors, who actually understands celiac disease. I am glad he won't insist on a gluten challenge to do a biopsy, because that is a dangerous thing to do.

I wished my husband would be as supportive as yours. You will do well with your doctor and your husband on board.

  • 2 months later...
Tripletmomma2000 Rookie
Tripletmomma2000
Posted
  • Author

I thought I would update everyone....

I had my children (triplets... in case you didn't see my username :) tested, and their doctor called me on this past Thursday afternoon. 2 of my children tested positive to the IGA test. Their test specified anything over a 10 is positive. One of my boys tested at 38, one tested at 29, and the other was a 6. So, two of the three have Celiac. After having a discussion about it with my husband, we've decided that our entire household will be gluten free. He can eat what he wants away from home, but this house has been cleansed of gluten, much to the surprise of my neighbors, that just came into a windfall of what WAS our pantry.

nikki-uk Enthusiast
nikki-uk
Posted
I thought I would update everyone....

I had my children (triplets... in case you didn't see my username :) tested, and their doctor called me on this past Thursday afternoon. 2 of my children tested positive to the IGA test. Their test specified anything over a 10 is positive. One of my boys tested at 38, one tested at 29, and the other was a 6. So, two of the three have Celiac. After having a discussion about it with my husband, we've decided that our entire household will be gluten free. He can eat what he wants away from home, but this house has been cleansed of gluten, much to the surprise of my neighbors, that just came into a windfall of what WAS our pantry.

Oh my goodness!! :blink:

A gluten-free house is definitely the way to go!!

Good Luck :)

gfpaperdoll Rookie
gfpaperdoll
Posted

Hi mom of triplets, A gluten free house is easier to manage, very smart of you to start right off doing that. I suggest a local support group & a ROCK group for your kids (Raising Our Celiac Kids)

Your other triplet could aslo have celiac, even with a negative blood test. The results from the gluten-free diet will let you know for sure...

Not a gluten-free book but I like SuperFoods by Steven Pratt, M.D., I find as we are eating gluten-free & DF for some of us that I try to get the most nutrition that I can & this is a good refresher course - I just ignore the grain & dairy parts :)

Guest Doll
Guest Doll
Posted
I had to go to my OB/GYN for my regular annual appointment, and she asked me how I had recently lost 70 pounds. I told her that I've been doing Atkins, but that I've noticed something strange... that when I have a "reward" meal every two weeks of pizza and beer, that I've been having weird things happen: Sudden onset of fatigue within 15 minutes of eating/drinking, literally having the wind taken out of my sails, gastric reflux, diarrhea, bloating, ungodly weight gain (always up 15-20 pounds the next morning) headache, malaise, etc. She asked if I've donated blood in the last few years, and I told her that I've tried, but have been turned down each time because of anemia. She decided to have my thyroid tested, and have me tested for Celiac Disease.

She called me today, and told me that my test came back as a 6.4, or, in her opinion, a transient positive. She said that although the test I had done was usually >7, but that there's a school of thought out there that she subscribes to that it should be a >5. I haven't really eaten gluten products since December except for once every 2 weeks. The morning of the test I had some white toast, and right before I left for the test I ate a bagel.

I understand now that I probably should have been eating gluten products for at least a few weeks before taking the test. How many days in a row should I eat gluten before having that particular test taken? (not sure of the name... transglutamine IGA or something therebouts) I plan on seeing my regular Internist tomorrow, and see what he has to say about this.

Any suggestions about what I should talk to my internist about? Do I have to have an endoscope verify the dx? Should I just forget seeing a Gastrointerologist (my OB said I should go see one) or is it important that I should? What if I just ate Gluten free... will that keep this disease at bay?

As you can see by my username, I have triplets... should THEY be tested? One of my three just isn't the same size as the other two... he's smaller and skinnier?

Thanks for helping a noob!

I personally would always count an "almost" or slightly positive as positive for Celiac. Especially since you had been gluten-free for a while prior, and have suspect symptoms. Welcome to the forum!

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