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Going To See Biopsy Surgeon
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I am new here...my 23 month old son has recently been diagnosed with borderline celiac disease through blood work. Joseph is giong to the surgeon Friday to set up a time to have his biopsy of his small intestine done. I am scared and my head is spinning :unsure: I have no idea where to turn with all this and I am on information overload.

My family and my husband's family are NO help...they think that we are crazy trying to find a cause to our son's chronic diarrhea. After 23 months I knew something was not right and I curse myself for waiting so long to find out what the cause was. I feel so guilty for poisoning my son's system with gluten.

I am hoping to find support and answers here, we are just at a loss and only have eachother to talk to. We just really need questions for the surgeon and lots of prayers that things go well.

Thanks, hope I find the support I desperately want here...

Tina

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Hi Tina,

We do the best we can for our kids and I know you feel bad about not knowing what was making your son sick but it's not your fault so don't beat yourself up over it. Now that you know he will get better! And isn't it good to know that a diet change not medicine will make him better.

Take care,

Lisa :)

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Ask the dooctor how many samples he will take. Two or three is not enough. Ten or more is good.

Does he believe you have to have flattnened villi to have celiac? Experts in celiac now believe that even mildly damaged villi should be considered celiac, not just gluten intolerance.

richard

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First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

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Hey Tina, I hope you are getting the answers you are looking for, you will be in my thoughts and prayers. talk to you soon!!! Your friend, Stacy!

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First, don't feel guilty. You can't bc you will make yourself crazy...and then confirm your family's thoughts! And we wouldn't want them to be right, right?!

That said, you go and you get your answers. My son was diagnosed in June at 2 1/2 years old, and he was down to 23 lbs.

The endoscopy is no big deal, and in fact your son will not even remember it. The worst part is the anesthesia/IV...but after that it's smooth sailing. My son even woke up and wanted McDonald's and then proceeded to run me ragged for the rest of the day instead of "laying low" as I'd hoped he would!

Definitely make sure the doc takes multiple samples from different spots in the intestine...one area may not be affected at all, while others are. This is a tricky disease!

Bridget

Thank you all. I will make sure to ask the surgeon to take from several places in the intestine. First I will ask what his intensions are before I tell him what to do..I know alot less than him since I do not have MD behind my name.

My Joseph weighs about 24 pounds...he eats everything in sight and does not gain an ounce. People just used to tell me it was okay because he was so active, but I am finding out that is not the case. The little guy would eat me out of house and home! He has a really bad diaper last night, now he has really bad diaper rash...just want to move on the next step and get rid of the diarrhea. But for now it is gluten, gluten, gluten to make sure that biopsy gives us the proper report.

Thanks again, I will try not to beat myself up too much, I just feel like I failed my son by not trying to get an answer sooner.

Tina

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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