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How Likely Do You Think It Is That I Have Celiac?


appletree729

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appletree729 Apprentice

I actually am hoping that I *do* as the treatment does not involve medication, and it's not something scary like cancer.  So what do you think the chances are that I have it?  I've got an endoscopy/biopsy and colonoscopy scheduled for later in October.  I'm 36 years old, mom of 4.

 

Symptoms:

 

nagging abdominal pain (why I started going to the doctor) but no horrible GI issues like diarrhea.

LOTS of burping after meals.

all the usual stuff - fatigue, lots of spaciness/brain fog

bloating/intestines that feel hard to me but no constipation.

 

I feel INFINITELY better when I am not eating gluten (but even better when I eat no grains at all, so I'm not sure if it's the gluten or grains for some reason)

 

Lab Stuff/diagnoses:

 

Hashimoto's thyroiditis

DQ2 + (two copies - 2.2/2.5)

anemic

normal celiac panel (deamidated gliadin was 3, total IgA was 143)

had unexplained elevated liver enzymes after my first pregnancy

 

Any thoughts?  I just can't believe I have to wait all the way until the end of October to even begin to get any more answers.  I decided to really pursue this because my kids have symptoms too and my poor baby boy practically stopped growing when we introduced solids.  He's being seen by a pediatric GI in October as well. I figure that if I have some answers myself we may find it easier to get answers for my kids (all 4 have digestive issues and 2 have had more severe intolerance reactions that required hospitalization)

 


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GF Lover Rising Star

If you're getting a scope to check for celiac, you need to keep eating gluten.  Same for the kiddos.   If the scope is also negative you can still start eating gluten free to see if you feel better.  Many here have gluten Intolerance and benefit from the diet.

 

Hope you find your answers. 

 

Colleen 

appletree729 Apprentice

oh yes - thank you - that is why I'm so annoyed that I  have to wait so long!  I want to stop eating gluten now and start to get healthy again but I know I can't until the biopsy is done.

 

I've been gluten free in the past though as a trial - that's how I knew that I felt better with no gluten.  But it's been over a year since I was gluten-free.

1desperateladysaved Proficient

I have no objectivity, I think everyone has celiac!  I think if you feel better gluten free than it is really likely you have an intolerance of some kind.  I hope you and your children will soon be able to ease your symptoms.  I felt fatigue, lack of energy, and brain fog as my main symptoms.  I also had the "pregnancy like bloat."

 

I am better.  I hope you will be able to finish your story, happy like that, soon.

 

D

cyclinglady Grand Master

When I went for a routine colonoscopy (yes, I'm over 50), the gastro looked at my chart (anemia, Hashi's) and said, "I"m going to order a Celiac blood panel, and if it's positive, I'm going to do an endoscopy".  I was shocked!  I had no abdominal symptoms.  I told him that "No way, I can't have celiac disease -- my husband has had this gluten free thing for 12 years!  What are odds that both of us need to be gluten free!  Whaaa!"

 

So, for the next seven weeks, I made my piece with gluten.  I ate, literally a loaf of bread a day.  I bought sourdough, made my own bread, baked cookies, cupcakes, brownies, pies, cobblers, purchased my processed grocery store goodies, ate wheat burritos, Italian Beef Sandwiches -- you get the picture.  I ate it all!  I knew that my biopsy was going to be positive (just a gut instinct).  Who cares about heart disease?  I always said that my gut was going to the the death of me!  By the end of seven weeks, I had all the abdominal symptoms that everyone talks about (except for massive cramping and diarrhea) and Marsh Stage IIIB.    

 

I was done with gluten for good.  

 

Let me say, it was pretty easy going gluten free.  I had already been cooking gluten free, shopping gluten free, and quizzing waiters about their gluten free menus (if my husband got glutened then it affected me!)    

 

My husband has been gluten-free for 12 years at the advice of my allergist and his GP.  Took a year of messing up, but after that he realized that gluten was pretty bad for him and our family!  Now, there's no way he'll ever do a challenge so we'll never know if he has celiac disease or an intolerance.  Who could blame him?  

 

The one thing I do miss is the ease of going out for a quick bite.  But, that's been easily overcome by planning better and freezing dinners in advance for those days when I'm just too tired to cook (thank you Costco for your gluten-free Rotisserie Chicken!!!!)

 

So, take this time to make your piece with gluten.  Eat it up, enjoy it and then you'll be ready to let it go.  Take the time to research and plan for cleaning out your kitchen.   Then look forward to getting well.  Because even if your biospy comes back negative, you already know that gluten is probably not for you!  

 

Best of luck to you and you little ones!

IrishHeart Veteran

 

 

So, take this time to make your piece with gluten.  Eat it up, enjoy it and then you'll be ready to let it go.  Take the time to research and plan for cleaning out your kitchen.   Then look forward to getting well.  Because even if your biospy comes back negative, you already know that gluten is probably not for you!  

 

Best of luck to you and you little ones!

 

 

Well.....she said it all so well (and mostly what I would have said) so, I will be lazy (because I am tired from packing all day and getting ready to move)

and say...DITTO! (thank you, Cyclinglady) ;)

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      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
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