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Newbie Seeking Info

Bones

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Bones Newbie
Bones
Posted

I been reading a lot about celiac disease. I believe that I have many of the symptoms fot being celiac. I also believe my children have thesame symptoms. I have asked for my primary care physician for testing myself for celiac and he thought that I was speaking another language. I have tried to go without gluten but I lasted for 3 days.

Now, I would like to pay for testing . So I am interested in knowing which labs are recommened and which ones to stay away from. I am also confused about blood testing vs. biopsy. Could anyone inform me if there is a specific formula to follow to find out if someone has celiac disease. Also, any sympathy physicians in the NJ area. So if anyone would be interested in offering some suggestion to this newbie would be helpful. Thank you.

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Lisa Mentor
Lisa
Posted

Bones:

I was treated with IBS symptoms for 27 years. It wasn't but four month ago that my symptoms got so out of control that my GP set me to the GI guy. I believe that I was pre-disposed and maybe have been non-symtematic (sp) for celiac disease for many years. But, during a period of high stress four months ago, the celiac disease kicked into high gear.

To make a long story short...during this time when I went to lunch for a salad, a half hour later, there was my salad and 1/2 of my stomach acid. I could not leave the house. So, hence the GI DR. I had an endoscopy exam with a biopsy and a colonoscopy. Colon, was great. Endoscopy and biopsy indicated scalloping of the upper intestines and flattening of the villi....which is consistant with Celiac Disease.

Two and 1/2 months into the gluten-free diet, I am not just beginning to feel like I can join the rest of the world. Every third day is a not so good day and am looking forward to every forth and every fifth and every sixth.....

I don't know if this answer any of your questions, but I hope it did. I wish you well and your children and if you feel they need to be tested, go with it.

Best of luch and I hope that I have been helpful to you.

Lisa B.

PS - If you are entertaining testing DO NOT GO GLUTEN FREE BEFORE TESTING.

It will not show the true testing/readings.

jerseyangel Proficient
jerseyangel
Posted

Bones, I don't know where you are in NJ but I go to Dr. John Kravitz in Mount Laurel. All I know is that he was the first and only Dr. who took my symptoms seriously and ran the tests. I agree, though, that if you plan on being tested that you do not stop eating gluten until after the tests to insure an accurate result. Good luck to you!

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

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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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

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      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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