Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

My Reintroduction Symptoms - Intolerance?


xx-gulliver-xx

Recommended Posts

xx-gulliver-xx Newbie
(edited)

Hi gang, sorry if I missed any stickies - I looked.

SHORT VERSION

Since January 1, I've been on a gluten + dairy elimination diet. A month in, I had a large portion of a likely-cross-contaminated meal, and for 3 days I had severe symptoms including nausea, diarrhea, fatigue, dysthymia, no appetite and a passing fever sensation (hot/cold swings). The nausea/stomach discomfort was so bad I would wake up and couldn't get back to sleep. This happened again last week after another contamination incident. These begin 12-24 hours after consuming gluten. Separately, I reintroduced dairy just once (whey protein powder) and had explosive gas and intestinal distress for most of the day (this one came on ~3 hours later but is a clear allergy). My questions:

  1. Are these unusual gluten intolerance symptoms? It was so severe I thought it must have been food poisoning.
  2. Does this suggest gluten/dairy sensitivity OR a natural sensitivity to foods one hasn't eaten in awhile? I.e. I'm not allergic to candy but when I had a handful after not having any for 3 months of boot camp, it was a colon crusher. And prior to the diet, I was able to eat both dairy and gluten with little to no irritation.

MORE DETAIL

  • I embarked on this diet because I've always had symptoms, accelerating in adulthood. These include:
  • A highly irregular BM schedule and volume, as well as frequent bouts of gas and bloating
  • Brain fog, and horrible/deterioriating short-term memory
  • "Sticky" weight (i.e., I'll diet + exercise for a month and lose almost no weight, while friends cut out only soda or spaghetti and lose 20 lbs)
  • Unpredictable fatigue + dysthymia/anhedonia
  • My brother is Celiac and lactose intolerant
Edited by xx_gulliver_xx

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



Celiac.com Sponsor (A8-M):



GFinDC Veteran
(edited)

Hi Gulliver,

I am assuming you didn't get tested for celiac disease before going on the gluten-free diet?  If true, that's unfortunate as the celiac disease antibody tests depend on having been on a regular gluten diet for up to 12 weeks.

The dairy reaction is a classic celiac symptom.  Celiac disease can cause damage to the villi lining the small intestine.  Those villi make an enzyme that digests dairy sugar (lactose).  Without the villi, there is no lactase enzyme, and no sugar breakdown.  That means the gut bacteria have a big sugar rush to feed on and start making lots of feeding byproducts.  Very fartilicious and bloaty.

Another thing, often it seems when we go gluten-free and then start eating gluten again the symptoms are worse than before stopping gluten.  The immune system is already at a high state of readiness and it just needs a little bit of gluten in the water to start a full blown attack.  Recovery from celiac damage can take 18 months or longer for some.  Also you may be low on certain nutrients like vitamins and minerals that your body and brain need to function well.  That can cause depression, fatigue and other unpleasant symptoms.

There is a sticky at the top of the Coping with section called Newbie 101, which may help some.  My guess is you have celiac disease but without testing it is hard to know for sure.

The reaction to sugary foods is probably dysbiosis, a fancy term for gut flora being all out of whack.  There's too many bad, nasty bacteria and not enough of the helpful ones.  This can happen when your gut is damaged and digestion is impaired.

I hope you feel better soon. :)

Edited by GFinDC
xx-gulliver-xx Newbie
20 hours ago, GFinDC said:

Hi Gulliver,

I am assuming you didn't get tested for celiac disease before going on the gluten-free diet?  If true, that's unfortunate as the celiac disease antibody tests depend on having been on a regular gluten diet for up to 12 weeks.

The dairy reaction is a classic celiac symptom.  Celiac disease can cause damage to the villi lining the small intestine.  Those villi make an enzyme that digests dairy sugar (lactose).  Without the villi, there is no lactase enzyme, and no sugar breakdown.  That means the gut bacteria have a big sugar rush to feed on and start making lots of feeding byproducts.  Very fartilicious and bloaty.

Another thing, often it seems when we go gluten-free and then start eating gluten again the symptoms are worse than before stopping gluten.  The immune system is already at a high state of readiness and it just needs a little bit of gluten in the water to start a full blown attack.  Recovery from celiac damage can take 18 months or longer for some.  Also you may be low on certain nutrients like vitamins and minerals that your body and brain need to function well.  That can cause depression, fatigue and other unpleasant symptoms.

There is a sticky at the top of the Coping with section called Newbie 101, which may help some.  My guess is you have celiac disease but without testing it is hard to know for sure.

The reaction to sugary foods is probably dysbiosis, a fancy term for gut flora being all out of whack.  There's too many bad, nasty bacteria and not enough of the helpful ones.  This can happen when your gut is damaged and digestion is impaired.

I hope you feel better soon. :)

Thank you for your kind and detailed reply!

I did not get tested; just figured since my brother is Celiac and I'd had persistent, mild to moderate symptoms for a decade+, I'd give the elimination diet a go.

It is interesting to hear that damage from Celiac can actually cause lactose intolerance... I love cheese and lots of foods with dairy ingredients, so this would be an enormous bummer whether it's primary or secondary.

I'm very curious though how unusual the gluten symptoms (borderline fever symptoms, nausea, insomnia, dysthymia, fatigue) I experienced are? Do these seem unusually severe? It definitely wasn't "just" discomfort, it felt like borderline flu (which I've already had this year, so it wasn't that). I would have thought it's food poisoning, except it happened 2x separately in 3 weeks despite not eating repeat food I think.

ravenwoodglass Mentor
2 hours ago, xx_gulliver_xx said:

.

I'm very curious though how unusual the gluten symptoms (borderline fever symptoms, nausea, insomnia, dysthymia, fatigue) I experienced are? Do these seem unusually severe? It definitely wasn't "just" discomfort, it felt like borderline flu (which I've already had this year, so it wasn't that). I would have thought it's food poisoning, except it happened 2x separately in 3 weeks despite not eating repeat food I think.

Symptoms like that are not unusual at all. Peoples symptoms can vary. Some folks get severely ill from even the tiniest amount of gluten while some celiacs are symptom free even on a regular gluten filled diet or think their symptoms are 'normal' or attribute them to something else. With a brother that is diagnosed it is likely you also are celiac. As mentioned you would need to go on a challenge for about 12 weeks to get blood work done.  If you desire a diagnosis a challenge is what you need to do.

xx-gulliver-xx Newbie
42 minutes ago, ravenwoodglass said:

Symptoms like that are not unusual at all. Peoples symptoms can vary. Some folks get severely ill from even the tiniest amount of gluten while some celiacs are symptom free even on a regular gluten filled diet or think their symptoms are 'normal' or attribute them to something else. With a brother that is diagnosed it is likely you also are celiac. As mentioned you would need to go on a challenge for about 12 weeks to get blood work done.  If you desire a diagnosis a challenge is what you need to do.

Just what I was looking for. Thanks all!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748

    melindakathleen
    Newest Member
    melindakathleen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for 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/   
×
×
  • Create New...