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

Just One Little Question.....


danikali

Recommended Posts

danikali Enthusiast

I just have a question about symptoms: If you HAVE Celiac Disease, not necesarily a sensitivity to gluten, but full blown Celiac, do you have symptoms all day long, with no break, where you feel AS SICK AS A DOG??

I have not been diagnosed yet. I'm getting blood tests next Wed. and enterolab should be in my mail any day now. But I've been eating A LOT of gluten and my symptoms come and go. Of course, there is something there every day, but it is always changing. Sometimes, it's something BIG, like bad leg cramps when I walk, or bad bad backaches, BAD constipation or diarrehha or lazy VERY HEAVEY feeling through out my body......but sometimes the symptoms are very small, like a little bit of a head ache when I touch my scalp, or a little bloating, or gas.

So my question really is, IF I HAVE CELIAC, WOULD I BE FEELING LIKE I HAVE THE FLU ALL OF THE TIME? AND FROM EATING SO MUCH GLUTEN (for my tests), WOULDN'T I BE GETTING A HUUUUGE FLARE UP RIGHT NOW? (Ex. body aches ALL OVER, constant back aches, "can't get out of :blink: bed-lieterally" kind of feelings?)

Any info. from those of you who were already diagnosed would be appreciated!

Thank you!


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



Celiac.com Sponsor (A8-M):



VydorScope Proficient

NO. If you never been gluten free, you body to a degree adapts to feeling bad, and it becomes eaiser to ingore. Plus there is a wide range in degree of SYMPTONS, but reguardless the damage is being done and will lead to future serious problems if your celiac disease is correct.

lizzy Apprentice

hi i was eating gluten everyday too untill was told not to eat any and some days my legs muscles in my thigh was so painful all i could do was get out of bed and sit on the sofa for the rest of the day and no pain med would take it a way, but then somdays it wasnt there or not as bad, same with the bone pain some days would be intoreble then others i could deal with it, so its hard to say what your body will do but i found i suffered the day after not the same day of over eating gluten, but then my symptoms arent just gastro ones i have gluten ataxia too caused by the celiac diease, and if i get alot of gluten i have seizures so i am very careful what goes in my mouth. i wouldnt risk anything for how i used to feel. i was in a wheel chair a month ago now am out shopping with a smile on my face, and learning lots from the people on here who i thank dearly for all they help and insight, liz

nettiebeads Apprentice

Vydor is right, the symptoms can change, which makes it even harder for drs to dx from symptoms. Even though I've been gluten-free for 9 yrs, my reactions to accidental glutening are different than they used to be. The D is gone, but the fatigue and irritablity live on. Good question though

KaitiUSA Enthusiast

Yep-I am pretty much backing up what was said in the previous posts.Some people get symptoms and some don't. You can't tell if it's celiac by symptoms. With or without symptoms, with celiac, you will still get the damage.

danikali Enthusiast

Wow!!!!!!!! :o

This is very interesting!!!! So it also probably makes sense that before, when I was (kinda gluten free, for the obvious things), and then I would eat something with very obvious and A LOT of gluten in it, I WOULD GET SOOOOOOOOOO SICK. But now that I am eating it everyday, my body is kind of getting used to it, so the symptoms aren't as bold as they once were. This probably makes sense too, am I right?

Thanks for the info. This is a very tricky disease. It could be a silent killer! That is so scary!!! :(

VydorScope Proficient
Wow!!!!!!!!  :o

This is very interesting!!!! So it also probably makes sense that before, when I was (kinda gluten free, for the obvious things), and then I would eat something with very obvious and A LOT of gluten in it, I WOULD GET SOOOOOOOOOO SICK. But now that I am eating it everyday, my body is kind of getting used to it, so the symptoms aren't as bold as they once were. This probably makes sense too, am I right?

Thanks for the info. This is a very tricky disease. It could be a silent killer! That is so scary!!!  :(

<{POST_SNAPBACK}>

Yes, it does. But just cause you symptons vary does NOT mean the damage does. The damage continues reguarldess.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
:lol: So my question really is, IF I HAVE CELIAC, WOULD I BE FEELING LIKE I HAVE THE FLU ALL OF THE TIME? AND FROM EATING SO MUCH GLUTEN (for my tests), WOULDN'T I BE GETTING A HUUUUGE FLARE UP RIGHT NOW? (Ex. body aches ALL OVER, constant back aches, "can't get out of :blink:  bed-lieterally" kind of feelings?)

<{POST_SNAPBACK}>

Having full blown celiac does not necessarily = lots of pain or symptoms. Some people with positive biopsies for celiac feel perfectly healthy and have no symptoms eating gluten while others with negative tests may be disabled by gluten. Reactions really do vary.

danikali Enthusiast

I also have a question regarding ANA testing:

.....what exactly is the connection with ANA test and Celiac, or is there any? My RA, looked at me like I was stupid when I asked her about Celiac disease, even though I did get a positive ANA.

I was also thinking, she said 10% of people who GET a positive ANA test have nothing. Maybe those 10% have Celiac, but doctors just don't test them for it. Because ANA is a test for any kind of autoimmune activity going on, am I right? ;)

Rachel--24 Collaborator
I also have a question regarding ANA testing:

.....what exactly is the connection with ANA test and Celiac, or is there any? My RA, looked at me like I was stupid when I asked her about Celiac disease, even though I did get a positive ANA.

I was also thinking, she said 10% of people who GET a positive ANA test have nothing. Maybe those 10% have Celiac, but doctors just don't test them for it. Because ANA is a test for any kind of autoimmune activity going on, am I right? ;)

<{POST_SNAPBACK}>

I have read that positive ANA doesnt always mean much...dont really know though. :unsure:

darlindeb25 Collaborator

When I was my sickest, before going gluten-free--I would have terrible days, bad days and not so bad days--I never really had good days. There would be nights I was up all night with diarrhea, sometimes never leaving the bathroom. When there was nothing left--my tummy would relax a little and then I would have a not so bad day--sometimes even 3 not so bad days. Ironically, when my tummy would settle, a piece of toast would be good. I didnt know I was feeding the fire. Once you are gluten free and the good days outweigh the not so bad days--soon they are mostly good days. Then if you get glutened by accident, its a really bad day usually. Aim for the good days, your life will be so much better. Deb

kelliac Rookie
Ironically, when my tummy would settle, a piece of toast would be good. I didnt know I was feeding the fire.  Once you are gluten free and the good days outweigh the not so bad days--soon they are mostly good days.  Then if you get glutened by accident, its a really bad day usually.  Aim for the good days, your life will be so much better.  Deb

<{POST_SNAPBACK}>

That toast statement reminds me, hospitals used to give a "BRAT" diet to patients with chronic diarrhea. It stands for Bananas, Rice, Applesauce, Toast". Talk about feeding the fire. Toast? for diarrhea. How many of those patients actually had celiac/gluten sensitivity?

Guest gfinnebraska

Before I knew about the celiac disease, I would just get the occasional D. Couldn't figure out why... I had bloating, gas, etc., but not every day or really bad. AFTER going gluten free and being that way for quite some time, a crumb will knock me on my bottom! It is usually that way ~ the "cleaner" you get your system, the more sensitive it is. Not a bad thing, I guess! Now I know exactly when I ate something that was NOT gluten-free ~ instead of having to guess days later. :)

ravenwoodglass Mentor
That toast statement reminds me, hospitals used to give a "BRAT" diet to patients with chronic diarrhea.  It stands for Bananas, Rice, Applesauce, Toast".  Talk about feeding the fire.  Toast? for diarrhea.  How many of those patients actually had celiac/gluten sensitivity?

<{POST_SNAPBACK}>

They still do reccomend the brat diet, I am active on an IBS board also and always reccomend the BRA diet instead. I also tell them that if they get relief and then feel sick again after the BRA is over and they are consuming regular food (gluten) they really need to evaluate gluten. Kind of a sneaky way to get people to rule it out but it seems to be effective.

Archived

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

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

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.