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Waiting For An Answer

Chrisco

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Chrisco Apprentice
Chrisco
Posted

I've had the blood work to test for Celiac done. I see the Dr tomorrow to get the results. I couldn't wait so I went to the lab and got a copy of the results. It shows that I am negative for Celiac. This may sound crazy but I was really hoping for a positive result. I have been sick for 15 years. I am sick with nausea all the time. The Dr's have never been able to give me any answers. I've got the "it's all in your head" explanation a hundred times. I started seeing a psychologist who doesn't believe it's in my head and encouraged me to keep seeing the Dr. I finally found a Dr who listened to me and she swears it is Celiac. I was so excited to have an answer. When I got the results my heart sank because I am still sick with no answer and no remedy. I take a lot of time off from work and I'm pretty sure that I will be fired soon if I do not get well. I know some people have said they tested negative but went on the diet and felt better. My Dr wants to send me for an endoscopy so I don't want to start the diet till after that because I'm afraid I might get a negative result. I know it may seem silly to want a diagnosis so bad but because I have had people not believe that I'm sick and that I'm making it up I feel like I need something to show them to say see I told you I was sick. Has anyone else felt this way? I feel like I'm alone in all this. Everyone is sick of me being sick and honestly I'm sick of it to. I feel like giving up and just not getting out of bed.

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Wolicki Enthusiast
Wolicki
Posted

You're not alone. Most of us have had similar problems.

Have the endo if you'd like, or you can just try the diet to see if you feel better. I hope you get answers soon. If it makes you feel any better, my son and I both have Celiac but BOTH our blood tests only showed abnormal high IGA serum. My little boy started the diet last Friday and has been strict. Yesterday at school, he wasn't thinking and ate a Red Vine Licorice. He spent the afternoon throwing up. He's already having exaggerated gluten responses after only one week. Blood tests are not so reliable. Although doctors think the postive biopsy is the gold standard, I believe the positive effect of diet is the gold standard. Just my two cents.

ang1e0251 Contributor
ang1e0251
Posted

There are reasons why your bloodwork could show negative. You could post the results here and see what responses you get. Waiting for the endoscopy is a good idea for you. Just remember that if your problem is gluten intolerance, the tests will all be negative even though you still have symptoms. Your dr can still dx you as gluten intolerant based on dietary response, if your testing continues to show negative. Hang in there, and keep on doing this step by step. Keep posting and we'll keep hoping for a good result for you.

happygirl Collaborator
happygirl
Posted

Which blood tests were run for Celiac?

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      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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