Jump to content
  • 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):

Maybe celiac?


Cows573

Recommended Posts

Cows573 Newbie

After months of being sick, and tested for everything else, all negative, sick of being sick, I tried a gluten free diet.

It definitely helped, except for accidental gluten, and taking ibuprofen...

Can’t face being tested, as I appear to be very sensitive to gluten now...  

But, I’m really struggling not to lose more weight, and my periods have stopped.  On a bmi scale, I am on the edge of underweight, but look ill.

I was slightly gaining, prior to ibuprofen and accidental gluten, but lost another eight pounds since...

Starting to be scared to eat, or eat around people eating gluten....  can anybody else relate?


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



Celiac.com Sponsor (A8-M):



notme Experienced

just curious about the ibuprofen - any that i have used is gluten free.  i have been told it contains iodine which may irritate your dh if you have that lovely celiac symptom.

try keeping a food journal - watch out for hidden gluten like barley malt or 'regular' soy sauce, which is made of wheat, etc...

read all labels - lay off eating out for awhile until you get your 'ce-liac legs'  (lolz)

i was very malnourished when i went off gluten (at the advice of dr dumba$$ haha) and then i gained like 20 lbs in the first month.  it was obvious gluten was a problem.  can you get tested to rule out other things like chron's or ulcers, etc?  you won't hafta do a gluten challenge to get other things documented that your problem is *not* - my g.i. doc did a bunch of tests like that bc she didn't want to risk me re-losing weight.  (they were threatening a feeding tube before they got the genius idea that it could be celiac lolz) 

Cows573 Newbie

I have been told, ibuprofen is not good, if you have any tummy issues...

I am being ultra careful regarding Hidden gluten, but recently, was from my husband kissing me, after pizza and garlic bread!

notme Experienced

here is a pretty good link - some of the info is old, but you'll get the basic ideas.

no kissing without brushing!!  soap and water, not hand sanitizer!!  also, you can hand wash your dishes or use the dishwasher - so long as your dishes are clean, lolz

keep that food journal - lay off dairy for awhile as if your villi are damaged, you will have difficulty digesting dairy.  i got lactaid and i still use it even though i can digest dairy now (and my husband likes it lolz)  also, oats are problematic for some of us.  i just got them back after, what, 8 years?  if your guts are inflamed (which should settle down) you may have trouble digesting certain things - in the beginning i couldn't eat raw veggies but now i can.  keep your journal and your reaction to eating and you may have to cut out some things but you might be able to add them back in as time goes by.  cutting out chocolate = almost killed me = but i can have it now!!  yay!!

Cows573 Newbie

I don’t tend to eat sugary things away, after trying to lose weight, after putting a lot on, a few years ago...

I don’t eat chocolate, generally, but going dairy free, would definitely be an issue!

After two months gluten free diet, I was feeling much better, with less and less symptoms.

But, kind of back to square one, with ibuprofen and glutened...

Simply, getting sick, of being sick!  I was, starting to gain a few pounds, but lost all that and more recently...

Has anyone else, had there periods leave, on a gluten free diet?

notme Experienced

that could be from you being underweight?   many women have reproductive issues and symptoms including missing periods and miscarriages (sadly, i had one long before i ever heard of celiac)  also, hormones will 'fake' a glutening, so pay attention to when your period would come even if it doesn't.  it may mimic a glutening (mine used to, even after i hit menopause i marked the calendar every month bc those lovely hormones are still happening, just not a whole lot)  around that time, i was always like:  what the heck did i eat lolz.  you could also try rotating your diet (not eating the same foods every day - i try to stay on a 3 day rotation, but usually every other day i can get by with)

as time progressed, i started shedding symptoms, like peeling an onion.  i even had a headache i didn't know i had until it went away.  i was so used to my head hurting lolz.  more energy, less brain fog, joint pain gone - sooooo many symptoms that doctors were basically treating as separate issues, but since celiac is systemic, it affects your whole body.  it is mistakenly dx'd as fibromyalgia, epstein barr, lyme, lupus - many other things - when all i really needed to do was change my (WHOLE ENTIRE LIFE LOLZ) diet :)

Cows573 Newbie

I was thinking weight loss, but had heard gluten free diet can stop periods...

Had regular periods at this weight before...

My accidental glutened, was after my period would have been due.  No chance of miscarriage or anything, as my partner has been snipped...

I am nearly 42 years old, and have no symptoms of early menopause either.  Regular as clockwork, then simply gone!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I would bet that your low weight may have impacted your menstrual cycle on top of possible elevated celiac antibodies.  Celiac disease is systemic!   Why would giving up wheat, barley and rye impact your menstrual cycle?  Lots of cultures never eat gluten (think Native Americans in Alaska) and they reproduce.  Some people do lose weight fast on the gluten-free diet because they reduce their calorie intake for reasons like being afraid to eat because it is going to hurt! Antibodies can remain elevated for over a year.  Consider asking for a celiac blood test even though you have been gluten free (believe me, the gluten-free diet has a steep learning curve and you may not really be gluten free and this is backed by data showing that about 60% of celiacs are still getting gluten into their diet).  Besides, celiac blood tests are used to help monitor celiac disease.    

I would advise a trip to the doctor.  Many women enter menopause early.  Get your hormone levels checked.  Guessing is not going to get you far.  Here are the celiac tests:

http://www.cureceliacdisease.org/screening/

knitty kitty Grand Master
On 3/13/2019 at 7:41 PM, Cows573 said:

I don’t tend to eat sugary things away, after trying to lose weight, after putting a lot on, a few years ago...

I don’t eat chocolate, generally, but going dairy free, would definitely be an issue!

After two months gluten free diet, I was feeling much better, with less and less symptoms.

But, kind of back to square one, with ibuprofen and glutened...

Simply, getting sick, of being sick!  I was, starting to gain a few pounds, but lost all that and more recently...

Has anyone else, had there periods leave, on a gluten free diet?

 

On 3/13/2019 at 8:16 PM, Cows573 said:

I was thinking weight loss, but had heard gluten free diet can stop periods...

Had regular periods at this weight before...

My accidental glutened, was after my period would have been due.  No chance of miscarriage or anything, as my partner has been snipped...

I am nearly 42 years old, and have no symptoms of early menopause either.  Regular as clockwork, then simply gone!

Vitamin D deficiency can cause menstrual irregularities.  Vitamin D acts like a hormone and helps regulate your cycle.  Because Celiac Disease causes malabsorption, many people develop deficiencies in vitamins and minerals. You might want to have your doctor check your Vitamin D level with a blood test.   Hope this helps

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. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

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

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    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

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...