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I Am Going Crazy!

Chelle15

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Chelle15 Apprentice
Chelle15
Posted

My emotions are all over the place! Because I have had diarrhea for almost 2 months after having constipation for years the doctor did blood tests for Celiac and I was told I have "two positive markers" and need to get a biopsy, so I have a consult a week from today. I feel like crap and I don't know if it is all in my head. I have struggled with depression, but right now I am so emotional and all over the place. I feel like I could cry. I am so wrapped up in myself and I need to just forget about it until I get the final diagnosis. Does two positive markers mean I probably have it? Any input on how to cope while waiting to get the final testing? I feel like I am ill, mentally and physically.

Thanks for all of your support so far and any further info you can give me on how to cope. Thank you, thank you, thank you! I am so glad I found these message boards!

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eleep Enthusiast
eleep
Posted

Your symptoms and feelings do sound very much like Celiac -- I had the crazy mood swings as well -- and the two positive markers are definitely more indication than I got at that stage in the diagnosis (I had to get genetic testing for total confirmation). It helped me a lot to focus on the fact that I would eventually feel better, that my moods were more about my body than anything going on in my life and that they would subside once I went gluten-free and got through the process of withdrawing from gluten. One of the distractions I used even before I took the step of eliminating it (still waiting to see if I was going to have an endoscopy) was to read up as much as I could on this board and to start thinking about my strategy for dealing with this stuff once I eliminated it -- looked at what my personal care products and stuff were that contained gluten, put together a collection of recipes and such that I would use, stocked up on Immodium (does help the moods too -- has to do with blocking endorphin receptors -- there's something about it on the board).

Other people may have some more concrete suggestions about managing the symptoms.

Ursa Major Collaborator
Ursa Major
Posted

If you use Immodium, be aware that the liquid Immodium has gluten in it. If you have two positive markers, you have celiac disease, even if the scope would be negative. Because the endoscopy often misses the damage.

ravenwoodglass Mentor
ravenwoodglass
Posted

Your not going crazy you are celiac. Welcome to the boards. After you have your endo please become gluten free even if the results are negative. Your depression should lift after you have been gluten-free for a while. Make sure that you eliminate gluten completely from your world after the tests.

mle-ii Explorer
mle-ii
Posted
If you use Immodium, be aware that the liquid Immodium has gluten in it. If you have two positive markers, you have celiac disease, even if the scope would be negative. Because the endoscopy often misses the damage.

Ugg! Really? You mean I've been glutening myself after being glutened? No wonder I feel like crap even when taking it.

Is there something similar that works quickly and doesn't contain gluten?

Chelle15 Apprentice
Chelle15
Posted
  • Author

You cannot imagine the help and support you have given me. No one wants to hear me talk about it anymore, so it is nice to come here and be able to talk about it and get my questions answered. Thank you for taking the time to help me feel a little better. :D So glad to have found this board.

StrongerToday Enthusiast
StrongerToday
Posted
Ugg! Really? You mean I've been glutening myself after being glutened? No wonder I feel like crap even when taking it.

Is there something similar that works quickly and doesn't contain gluten?

Pepto and regular Immodium - but NOT soft chews!! - are fine.

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mle-ii Explorer
mle-ii
Posted
Pepto and regular Immodium - but NOT soft chews!! - are fine.

I'm really confused now. What exactly is fine and what is not? Sorry, but I'm not going to take any more chances and get sick. Regular immodium to me is the liquid.

Is there a list?

eleep Enthusiast
eleep
Posted

You want the Immodium caplets -- I don't know what else is gluten-free. Also, I don't know whether the CVS generic version of Immodium is gluten-free as well, so you probably want the brand name (or at least to confirm).

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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.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

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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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