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Does it sound like I have Celiac Disease?


Zitrob

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Zitrob Newbie

Hello,

I am kind of new to all of this and all of the information I am reading through is a bit overwhelming so I thought I'd ask the opinions of some folks who have gone through this. 

I have been feeling unlike myself for close to a year now. I went from a guy who was rarely sick (only been to see a doctor maybe 5 times in my life) to one who feels pretty bad most days. 

Since this all began I have had a few different symptoms including weakness/fatigue, nausea, night sweats while cold, minor abdominal pain, testicular pain, lower back pain, headaches and have noticed some things that were not normal before such as weight loss (about 30 lbs in a year, 6ft2in started at 209lb and am now around 178lb so its not like I needed to lose the weight), bruising easier, swollen gland in my throat.

I have seen a few different doctors, the first of which said it was probably allergies and to take an antihistamine. The second thought maybe gut problems so he prescribed two different meds. I think they helped but the symptoms come and go regularly so there is no way of knowing if it was the meds or just the natural cycle of whatever this is. I finally visited an allergy specialist and she very thoroughly examined me. She sent me for blood work as well as an ultrasound on the swollen gland in my neck. The ultrasound came back normal but the blood tests showed slight allergies to soy, peanuts, corn, as well as a "slightly elevated" TTG-IGA reading. Not exactly sure what the value was but when I saw the gastroenterologist he said that "anything below a 3 is considered normal and yours came back at a 4."

I have an endoscopy scheduled in about a week and should know by then but I wanted to see if my symptoms sound like celiac symptoms or something else? Hashimoto's runs in the family but the weight loss can't really be explained if thats it. Also, I have been mostly gluten free for about 2 and half months since first hearing of the TTG-IGA results, only about 10 things that I know of contained gluten since then but since I'm new to this its probably more than that. Will this affect the endoscopy results? I asked the receptionist when scheduling if I need to be on a normal gluten diet before the endoscopy and she said no. 

Any help would be greatly appreciated.

Thanks


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trents Grand Master

The receptionist gave you a bum steer.

Yes, significantly reducing your gluten intake for 2.5 months could have an impact on the endoscopy/biopsy results but that is not enough time to allow for complete healing of the villi, especially if you are still getting some gluten in your diet. It may not give unequivocal test results, however, leaving your doctor unsure about the results. But it will be what it will be.

Scott Adams Grand Master

If you want a definitive diagnosis you may want to postpone the endoscopy for a few weeks and keep eating gluten until it’s finished, otherwise you may not get a clear answer, although your blood tests results probably indicate gluten sensitivity at the very least, and possible celiac disease.

Zitrob Newbie
2 hours ago, trents said:

The receptionist gave you a bum steer.

Yes, significantly reducing your gluten intake for 2.5 months could have an impact on the endoscopy/biopsy results but that is not enough time to allow for complete healing of the villi, especially if you are still getting some gluten in your diet. It may not give unequivocal test results, however, leaving your doctor unsure about the results. But it will be what it will be.

 

13 minutes ago, Scott Adams said:

If you want a definitive diagnosis you may want to postpone the endoscopy for a few weeks and keep eating gluten until it’s finished, otherwise you may not get a clear answer, although your blood tests results probably indicate gluten sensitivity at the very least, and possible celiac disease.

That’s kind of what I figured after reading through the forums here, that’s why I thought I’d ask. My endoscopy isn’t until the 12th, if I start eating gluten today is 8-9 days enough time to have the damage be more clear? Like I mentioned I haven’t been 100% gluten free but definitely a lot less than before. 

Scott Adams Grand Master

The usual amount of time for an endoscopy would be two weeks of eating a slice of wheat bread each day, longer for blood tests:

 

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    • trents
      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
      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
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      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
      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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