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Does This Sound Like Celiac To You?

Laura--G

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Laura--G Rookie
Laura--G
Posted

While my son was already diagnosed with Celiac, he never had symptoms. He is a Type 1 Diabetic and his Endo tested all her patients and, luckily, we caught it early.

So it seems strange that I am here looking for answers for someone else. I just recently met someone who I think may have Celiac. He is 19 and about 5'10 and weighs 115 pounds. The first time I met him I was making pancakes for my non-gluten free family members and asked if he wanted some. He managed to eat half of one before doubling over in pain and telling me he didn't want to be rude but eating makes him hurt. Since I've met him I've rarely seen him eat more than a few bites. He says he doesn't know what's worse...the pain from not eating or the pain from eating. He then told me he has been to many doctors and had a lot of tests done but they were x-rays and things of that sort. He had one doctor send him home with a bag full of laxatives. He gets tired frequently but only for a short time. I convinced him to make an appointment for a Celiac test. He's new to our area and doesn't have a regular doctor yet so he called his insurance company and just made an appointment with the first doctor he called. How accurate are the blood tests? What if the doctor has never dealt with Celiac? Does this sound like Celiac to you? In a way I hope it is so I can at least help him but if it isn't I have no idea what to do for him.

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Laura--G Rookie
Laura--G
Posted
  • Author

So he was at the doctor when I posted that. The doctor said he's sure it's IBS and scheduled a colonoscopy. He said it doesn't sound like Celiac. I still think it does. Luckily, my friend said he really wanted the blood tests anyway so they did them.

Belinda Meeker Apprentice
Belinda Meeker
Posted
So he was at the doctor when I posted that. The doctor said he's sure it's IBS and scheduled a colonoscopy. He said it doesn't sound like Celiac. I still think it does. Luckily, my friend said he really wanted the blood tests anyway so they did them.

Hi Laura, well i 'am no doc but it sounds like to me it could be, this disease is so tricky...it took the doc's 15 years to figure out my 6ft 140 >17 years old to get a DX he was the same way hurt to eat anyhting at all for a long time.....is ur friend also white pasty looking most of the time? that and the fatigue was what the doc that DX'D my son's even without the test (but test was post. for Celiacs Sprue) o maybe u r right he should have complete blood and biopsy work up but in our case (hubby and I ) same sympt. both came back negative so we r going for Gene testing now.....wish u and ur friend the best of luck! :)

Laura--G Rookie
Laura--G
Posted
  • Author
Hi Laura, well i 'am no doc but it sounds like to me it could be, this disease is so tricky...it took the doc's 15 years to figure out my 6ft 140 >17 years old to get a DX he was the same way hurt to eat anyhting at all for a long time.....is ur friend also white pasty looking most of the time? that and the fatigue was what the doc that DX'D my son's even without the test (but test was post. for Celiacs Sprue) o maybe u r right he should have complete blood and biopsy work up but in our case (hubby and I ) same sympt. both came back negative so we r going for Gene testing now.....wish u and ur friend the best of luck! :)

He is absolutely white and pasty.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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