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

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.