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Hope I Have Celiac...what Else Could It Be?

jennyo

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jennyo Newbie
jennyo
Posted

My blood panel came back negative, but I do have one of the genes, so I went for a biopsy last week. I'm so hoping for celiac disease because if not, we're back at square one trying to get some kind of cause for what's wrong with me. I'm worried that I didn't eat enough gluten before the biopsy. I was planning on it, but I got the biopsy scheduled so quick I didn't get a chance to beef up my gluten intake. The night before I ate about 10 ginger cookies though so hopefully that did enough damage!

So here's my question. I obviously have some kind of malabsorption going on. I have lost about 30 lbs over the last few years and eating more than ever. No GI symptoms though. Infertility issues, and when I finally did get preg via IVF, my poor baby wasn't thriving in the womb. They had to induce early because he wasn't growing enough. It appeared that I was malnourished, but I am the healthiest eater of anyone I know! Any suggestions on what else it could be if not celiac??? Any ideas would be greatly appreciated. I feel like I"m dying here, and I'm so embarrassed to be around family. I have no friends left either because I avoid situations where people will comment about me looking sick, or being so skinny.

I also have low red blood cell count, low white count, and low platelet count. Literally, I am fading away! :huh:

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ShayFL Enthusiast
ShayFL
Posted

I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

jennyo Newbie
jennyo
Posted
  • Author
I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

How did you know how to do all that? Your own research or did you see a holistic nutritionist or someone? I think I do definitely have candida too -- I did a home test. I was going to wait and see if I got a celiac diagnosis and then do a candida cleanse too. But, there is definitely something else going on. I plan on going gluten-free regardless. But, I do so want some kind of diagnosis, even if it's an allergy or something. Thanks for the reply! (...hope I'm posting this in the right place--still new at this)

*lee-lee* Enthusiast
*lee-lee*
Posted

were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

jennyo Newbie
jennyo
Posted
  • Author
were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

No, I have never gone completely gluten free for more than a day. I would say "gluten-light." Meaning, no cereal in the AM, but still a sandwich for lunch. Maybe 2-3 glutens a day for the month before the tests and biopsy. Is that enough to still show damage? I've been "sick" for at least 10 years so there has been plenty of damage over the years. Hopefully that'll still be there despite toning down the intake recently.

*lee-lee* Enthusiast
*lee-lee*
Posted

i'm no expert...but i think you can have a false negative and still have Celiac. did the doctor say anything after the biopsy? mine wouldn't let me leave the hospital before he briefly reviewed his findings (which was no visable damage but the samples were being sent off to a pathologist for further inspection). he also gave me a print out which included pictures of my insides - kinda gross but cool if you like those types of things!

jennyo Newbie
jennyo
Posted
  • Author

False negatives--how annoying! She reviewed the findings with me after the endoscopy, which was the same --no visable damage but sending it off. Oh yeah, and acid damage from a hiatal hernia (great). Anyway, can they usually see damage at the surface? I'll be so bummed if the biopsy comes back negative.

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*lee-lee* Enthusiast
*lee-lee*
Posted

i'm not sure what they can and can't see when they're actually doing the procedure.

i cried when i got the negative result back. the last thing i did was test for the genes, which i have 1 of. Still not enough for an official diagnosis but i feel so much better not eating gluten so i've come to grips with it.

does your doctor have any other ideas if they rule out Celiac?

jennyo Newbie
jennyo
Posted
  • Author

I don't think she knows what to do if it's not Celiac. I don't know, she said something about referring to a nutritionist to see if I'm eating enough calories, which means I guess she thinks I'm lying about how much and how healthy I eat. Plus, what can explain the low blood cell counts and low platelet counts? It definitely looks like some kind of autoimmune thing to me. I'm hoping someone on here might have some ideas of where to go next. The Hematologist is pretty much done with me, she sent me on to the GI. If it's not a GI issue, I don't know...

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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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