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Maybe It Is Celiac...

chocolatebunny

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chocolatebunny Rookie
chocolatebunny
Posted

A year and a half ago, a doctor put me on the gluten free diet even though my blood test results were negative due to failure to absorb certain vitamins. I've skeptically followed the diet, mostly because I have a mom who insisted and who also eats gluten free (I'm 17). I've been skeptical that I've really had celiac because I've had no gastrointestinal problems that are classically present with celiac. When I went on the diet, I did feel more energetic and my thyroid improved, but I thought that maybe it was unrelated. Anyway, last week I decided to reintroduce gluten into my diet. I just felt so tired and mentally foggy and unfocused and moody... I hadn't felt that bad since the months before I went on the diet. I even became pale and my cheeks were puffy and I had bags under my eyes- my mom told me I looked terrible and that is not like her. I didn't think it could be related, but my mom and chiropractor told me to go back off gluten products and in 2 days I felt better and more relaxed and focused- my mental fog lifted and I started to look healthy again. I'm starting to think that maybe I do really have celiac disease, but is it possible to have the disease with no gastrointestinal symptoms?

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Ursa Major Collaborator
Ursa Major
Posted

Yes, it is absolutely possible. There are people here who's only obvious symptom was anemia, yet their villi were completely destroyed. Some people have no obvious symptoms at all with celiac disease. You might feel lethargic, have brain fog, aches and pains from gluten, yet never connect the dots and suspect celiac disease.

From your reaction to the gluten, and the subsequent improvement when going back on the gluten-free diet makes it perfectly obvious that gluten is a huge problem for you. Whether you call it celiac disease or gluten intolerance makes no difference, the fact is that you need to stay away from gluten.

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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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