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 -- Question About Symptoms

KikiB

Recommended Posts

KikiB Explorer
KikiB
Posted

Hi everyone, I had mono back in April. A couple of months after the mono, I would have days of terrible fatigue and muscle weakness -- mostly in my legs. Once in awhile, the arms. It would usually resolve after sleeping overnight. I couldn't figure out the cause but then it seemed it was tied into eating. But it was confusing because I couldn't figure out a pattern.

Then I noticed that I would get queasy after eating things I have eaten my whole life. For example, when I was off work with the mono, I ate a lot of organic hamburgers for the protein, with buns. But now the hamburgers make me queasy and bring on the fatigue and muscle weakness, my homemade pizza, takeout pizza, waffles at iHop, the mexican restaurant I've been eating at for 8 years... Then I had a really bad case after eating my Bisquick coffee cake which I make every weekend. That episode made me miss 3 days of work.

Nausea, fatigue, muscle weakness. I've been constipated for about 10 years, and take Dr. Schultz Formula No. 1 for that. Sometimes I have issues of D. I figured it's just because my digestive system has never quite been right.

My regular doctor sent me to a neurologist for the muscle weakness -- he hasn't found anything. Then she sent me to a rheumatologist. The rheumtologist took 8 viles of blood for testing and I know she is testing me for Celiac. I have been gluten free (to the best of my knowledge -- it seems pretty tricky) for 6 days (since the blood tests). I feel a little better, but not a lot, if that makes sense. I get my test results on Wednesday.

I should probably add that I also have asthma, which I believe is an autoimmune disease.

Are these normal symptoms for Celiac? Would it just start after mono? I have been queasy on and off for at least 20 years. The fatigue is not regular, it's debilitating, and I have to go right to bed -- and I can't bear the muscle weakness.

Thanks for any information you can give me.

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome!

Celiac disease has a genetic factor, but also requires a trigger to activate. An infectious disease can be the trigger, and mono has been cited by a number of members here over the years.

Your symptoms are consistent with celiac disease, but could have other causes.

mushroom Proficient
mushroom
Posted

I would caution you that if your tests come back positive for celiac they will probably want to do an endoscopy with biopsy to confirm the diagnosis. For this test you should still be eating gluten or you risk a false negative on the biopsy, especially if you have to wait a week or two for it.

KikiB Explorer
KikiB
Posted
  • Author

Oh dear. I didn't realize you can't be gluten free for the endoscopy. I thought that test was just to determine damage to the intestine.

Doesn't it take 8 to 12 weeks to be rid of gluten? It's only been 6 days for me. How much gluten would I need to consume to keep the test accurate?

I really don't look forward to having another episode. :(

kittty Contributor
kittty
Posted

the mexican restaurant I've been eating at for 8 years...

Were you eating flour tortillas and/or other gluten foods at the Mexican restaurant? My favorite Mexican place was one of the few places where I didn't get a reaction, which later made sense because they only have corn tortillas and don't put gluten in anything.

I'm just wondering in case it doesn't fit the gluten pattern. But your symptoms do sound celiac. I never had the muscle weakness, but muscle aches and cramps were frequent.

Is it possible that some of your symptoms are caused by lingering mono? A friend of mine had mono when we were in high school, and she was fatigued and achy for many months after. She missed almost a whole year of school.

KikiB Explorer
KikiB
Posted
  • Author

Were you eating flour tortillas and/or other gluten foods at the Mexican restaurant? My favorite Mexican place was one of the few places where I didn't get a reaction, which later made sense because they only have corn tortillas and don't put gluten in anything.

I'm just wondering in case it doesn't fit the gluten pattern. But your symptoms do sound celiac. I never had the muscle weakness, but muscle aches and cramps were frequent.

Is it possible that some of your symptoms are caused by lingering mono? A friend of mine had mono when we were in high school, and she was fatigued and achy for many months after. She missed almost a whole year of school.

At the Mexican restaurant I always get chicken tacos with a side of rice and sour cream.

The muscle weakness has gotten worse consistently, and now familiar foods trigger it along with the fatigue. I think that's why she's testing for Celiac.

mushroom Proficient
mushroom
Posted

Oh dear. I didn't realize you can't be gluten free for the endoscopy. I thought that test was just to determine damage to the intestine.

Doesn't it take 8 to 12 weeks to be rid of gluten? It's only been 6 days for me. How much gluten would I need to consume to keep the test accurate?

I really don't look forward to having another episode. :(

While it takes a long time to fully heal from the effects of gluten, healing does begin to take place as soon as it is withdrawn. Depending on how much damage you have in your intestine, that might be just enough to take you out of the positive category on the lab results. It is recommended that you keep eating a normal gluten diet. The six days so far should not make any difference so long as you resume the gluten.

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

Celiac.com Sponsor (A8-M):


KikiB Explorer
KikiB
Posted
  • Author

While it takes a long time to fully heal from the effects of gluten, healing does begin to take place as soon as it is withdrawn. Depending on how much damage you have in your intestine, that might be just enough to take you out of the positive category on the lab results. It is recommended that you keep eating a normal gluten diet. The six days so far should not make any difference so long as you resume the gluten.

Thank you for the information. Would it be ok if I only ate gluten in my last meal of the day? That way if I get sick, I'm going to bed anyway. Would that be enough gluten?

GottaSki Mentor
GottaSki
Posted

Welcome Kiki!

Your symptoms could be caused by Celiac Disease. You do need to resume eating gluten until all testing including endoscopy are complete. Some Celiac Centers suggest one slice of bread containing gluten per day is enough. I have read that a person needs to ingest up to four slices, but I'd go with what the Celiac Centers - maybe a sandwich with two slices, but you don't need to overdo.

Once you are able to remove all gluten it may take time for you to feel better. That you feel slightly better after six days is a very good sign.

So continue to eat gluten until you are sure you are through with testing, then either way remove ALL gluten for at least three months. There are no medical tests for Non-Celiac Gluten Intolerance. If your tests are negative, you still need to remove gluten as this is the only test for NCGI.

Good Luck - I hope adding gluten back in for a few weeks isn't too rough on you.

GottaSki Mentor
GottaSki
Posted

Thank you for the information. Would it be ok if I only ate gluten in my last meal of the day? That way if I get sick, I'm going to bed anyway. Would that be enough gluten?

I think this is a good idea. Just make sure you don't miss days. Gluten-lite can even reduce the chances of positive blood work and biopsies.

KikiB Explorer
KikiB
Posted
  • Author

I think this is a good idea. Just make sure you don't miss days. Gluten-lite can even reduce the chances of positive blood work and biopsies.

Thanks, Lisa. It's funny that after such a short period of time I find the thought of eating gluten scary.

GottaSki Mentor
GottaSki
Posted

Thanks, Lisa. It's funny that after such a short period of time I find the thought of eating gluten scary.

This is normal and will help make your transition to gluten-free a bit less stressful after testing is complete. Those that have no reactions often have a very difficult time believing that they really need to remove ALL gluten.

Hang in there :)

1desperateladysaved Proficient
1desperateladysaved
Posted

I did sight mono at 19 years old as being a time when my symptoms became noticeable and were new. I mention it in my blog on this forum. "Back From Nowhere." is the entry.

Archived

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

Go to topic listing

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

      IBS-D vs Celiac

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

      IBS-D vs Celiac

      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...
    3. knitty kitty
      - 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.

      @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...
    4. Jane02
      - 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.

      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...
    5. knitty kitty
      - 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.

      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...
  • 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
      IBS-D vs Celiac

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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.