Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here With Questions...

Sooz

Recommended Posts

Sooz Newbie
Sooz
Posted

Hello!

I've just joined. I've been having belly problems for about 4 weeks. I've been gluten free for about 2 weeks now and definitely feel better, but not completely. I'm still having very random attacks of belly cramps, yet I'm eating very simply (all fresh meat and vegetables, occasional eggs, with the odd gluten-free cracker) - definitely gluten free. I have another related disease - Type 1 Diabetes, so Celiac is being considered.

I had a routine anti-gliadin test a couple of years ago, but it was negative. On the other hand, I'm generally low carb and I doubt I'd have been eating enough gluten at the time - maybe a slice of bread once a week or so, maybe a cracker here and there. Not sure it was enough.

While I'm being booked in to a gastroenterologist, getting scans done and so on (all of which is a bit impossible during the holidays), I have some questions:

I had B12 tested a few days ago and it's normal. My question is... how long does it take for B12 to be depleted in untreated Celiac? And how long does it take to replete after going gluten free?

Being gluten-free now, I assume that no regular blood test (other then gene testing, which my family doctor can't order) would show much. Even an endoscopy might not show much after such a short time, from what I understand. What do you think?

I'm not so much interested in a diagnosis right now, this minute (that may come later), as making sure I'm on the right path to fix the problem. If gluten-free fixes it, then I'm ok with that, however, I'm not completely convinced it's gluten. Only time will tell, I guess. Any assistance would be appreciated.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Why not wait a few months for the testing & eat wheat & lots of it before testing? If you stop eating wheat & partake of only little amounts then you are wasting your money or insurance because the test will not be accurate( a false reading).If you honestly don't care about a formal dx's then why even bother testing just stop eating gluten..

B-12 deficient is a common problem for many celiac, gluten intolerant or a person without other health issues..Another is Vit D-3

For me, B-12 under the tongue or swallowering never helped, I take Bi-monthly injections to see any difference. The range for B-12 is wide, like 300 to 1000. But most like the B-12 around 850 - 900.Mine lingers around 450 without injections & when I don't take the injection it drops rapidly....

I do think celiac or gluten intolerant is possible for you..

And have you given thought about the several types of flu being shared across the country.I seen people for over three weeks with nagging , lingering issues ie: upper chest, cough, inflammation, Big D, vomiting, Fatigues, aches & pains just enough to annoy daily life....

Feel better soon.

rosetapper23 Explorer
rosetapper23
Posted

If you don't care about a DX, I'd just continue eating gluten free. You'll have your answer if you ever accidentally slip up in the future--if gluten's a problem, you'll know it! Not all celiacs have nutritional deficiencies, and I suspect because you've been "gluten light" for years, you probably don't have any. You might just want to get your iron, B-12, and D3 tested occasionally to be on the safe side. Otherwise, simply enjoy the gluten-free lifestyle....and stay well, my friend.

Sooz Newbie
Sooz
Posted
  • Author

Why not wait a few months for the testing & eat wheat & lots of it before testing?

Pretty much impossible unless I want to be doubled over with cramps.

Whatever I have, is so much better since guten-free, but not entirely gone. I'll go quite a few days and be perfectly fine, then the cramps will be back for around 15-24 hours. Then fine again. I had some corn couscous (gluten-free on the packet) the other night and the next day I had problems. I'm learning that even some gluten-free foods are a problem for some people, so I'm back to eating just chicken, lamb and fresh vegetables. Really fine today and feel great.

I've learned on this forum that I should probably get rid of diary for the moment too, although I don't have lots of it by any stretch. I can tolerate live culture full fat yoghurt (it seems to help), but I haven't gone near milk. Doc prescribed probiotics which I'm taking, plus peppermint oil before meals, which I haven't been taking other than some fresh mint in tea now and then.

And have you given thought about the several types of flu being shared across the country.

I'm in Australia in the height of summer, and have no regular flu symptoms, no temperature etc. My white cell count is perfectly normal. My doc concludes bacterial infection is unlikely, but is sending me for fecal tests anyway, to rule out things like giardia etc, plus a scan to rule out other things eg gall bladder and so on, although I don't have typical gall bladder pain. I also assume if it's some kind of bug, I wouldn't be going 4-5 days without a single problem.

I've had other symptoms for ages, like that truck hit me feeling after bread - and my blood glucose wasn't the problem, which I've proven with rigorous testing. My Type 1 diabetes is under pretty good control with an insulin pump. The odd thing is that I haven't had these belly problems before. Maybe they've come on because I was eating more gluten than usual in the months leading up to this,

It's a process I guess, and the more simply I eat at the moment, the better, I assume. I was eating pretty clean food to start with, and have done for years but there was some gluten in my diet, which is now gone. Everything I use to prepare food has either been steam cleaned or put through a hot dishwasher. I'm not eating out at the moment, and not eating at any one else's house, so far. That's all bad enough doing low-carb, but now with gluten-free, and until I figure out what I can and can't eat, and indeed what the problem really is, accepting dinner invitations is dicey at best.

Sooz Newbie
Sooz
Posted
  • Author

If you don't care about a DX, I'd just continue eating gluten free. You'll have your answer if you ever accidentally slip up in the future--if gluten's a problem, you'll know it! Not all celiacs have nutritional deficiencies, and I suspect because you've been "gluten light" for years, you probably don't have any. You might just want to get your iron, B-12, and D3 tested occasionally to be on the safe side. Otherwise, simply enjoy the gluten-free lifestyle....and stay well, my friend.

I was definitely tested D3 deficient about a year ago, but then I'm in my 50s and on top of Type 1 diabetes, I have lupus as well, so I don't tend to hang around in the sun much.

It would be nice to have a dx, but the main thing at the moment is to get rid of these awful belly symptoms, and some nausea which is now gone. There are probably lots of symptoms, which, once they're gone, I'll notice I had them. With a number of autoimmune diseases, symptoms tend to overlap. I'm still hoping that this is some kind of bug that will go away. Wishful thinking, I guess!

mamaw Community Regular
mamaw
Posted

You are headed in the right direction. If it is a gluten issue it can take TIME for one's body to adjust to the new foods & the way we eat in general...If you feel better without gluten then go for it. But you did mention that maybe down the road you may seek a formal dx's, my suggestion is if you are thinking about a formal dx's do it now before you get all feeling wonderful then put your body into gluten attack.. I just think it would be less trauma now...

Plus many of us after going gluten-free learn how to read our bodies much better & then we find out other foods besides gluten becomes an issue...we probably had the issue all along but we become so in tune with our bodies our radar starts to pick up more hints...

nightshades, MSG, Soy, dairy, corn seem to become culprits for many...

It is also good that doctor is checking out the gallbladder.........

I'm not a sunworshipper myself.. My D-3 was very low so I do take a Vit D 3 with K-1 & K-2 daily...

Again, I hope you feel better soon.....

Sooz Newbie
Sooz
Posted
  • Author

But you did mention that maybe down the road you may seek a formal dx's, my suggestion is if you are thinking about a formal dx's do it now before you get all feeling wonderful then put your body into gluten attack.. I just think it would be less trauma now...

I understand what you're saying, but in the public system here, I can wait many months for an endoscopy. Plus in my normal diet, I'm not such a big grain eater anyway because of the carbs. Putting my body under stress if it is gluten, and dealing with more insulin because of the carbs, isn't something I'd want to do for any length of time.

What's odd is that this (cramps and nausea) came on suddenly about 5 weeks ago, although I've had milder symptoms for years, which easily could be attributed to other things as well as gluten. But if I've had this for ages, then a normal B12 doesn't fit, does it?

I guess it's a mixed bag - I don't really know what I've got. It seems I'm quite a bit better without gluten, yet have had the odd day where I haven't been better on gluten-free and I'll have what I call an 'attack'. I think the trick will be to rule out the easy stuff, which my family doctor can take care of, and then wait for the gasto appointment, armed with test results, and see what kind of tests he can run - eg gene testing etc. I just have to get one idiot doctor (had plenty of those) and I'll be back where I started.

I seem to have a knack for being misdiagnosed over the years. I don't want this to be another one. At this stage, the possibilities of what I may have are many. Other than some strange virus, gluten seemed the obvious first choice.

I'm going to keep being gluten-free for now, taking our more dairy and maybe corn, to see if that helps, and see what develops along the way with the medical stuff.

Appreciate everyone's help! This sure is a minefield!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Sooz Newbie
Sooz
Posted
  • Author

Ah, idiot me! Totally forgot that our beloved Vegemite has gluten! It might well explain those random, thus far unexplained, symptom days. Without a food diary, which I've been meaning to start, I can only guess it has been a contributor in the last two weeks, when I've been thinking I'm totally gluten-free, but having overt symptoms on random days. Duh - big time!

Ok, so now I will see what happens without the Vegemite. And yes a food diary is a must!

One more question about how suddenly all this came on 5 weeks ago. From what I'd call nothing to thinking I had an awful bug from one day to the next. Is that possible?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.