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

Mystery Pain....help!


mandigirl1

Recommended Posts

mandigirl1 Enthusiast

hello fellow celiacs,

I could use help/advice ASAP!!!!!

Was diagnosed 8 yrs ago with celiac. Living gluten free since. however, i never feel like my stomach is "normal"....theres always an "off " feeling, whether it be gas, bloating, uneasy bowel movements, etc....i EVEN THOUGHT I SAW BLOOD IN MY STOOL A FEW WEEKS AGO ALTHOUGH im not positive what blood looks like except i know its not bright red but rather dark red/brown and thats what i thought i saw. its also always a struggle to pass my bowels, im guilty of "squeezing" myself to death!!! then i feel swollen/raw.

well, for the past 2 weeks i have pain in my pelvic region like a dull ache affecting me when i bend over or lift my knee to my chest. Im very active, work out (although not recently), never had this feeling before........my dr. suspected a cyst on the ovary, yet when i had a pelvic exam, the dr. didnt feel anything wrong with female parts, so I had a CAT scan done with contrast, blood work, urine culture, and the results showed nothing on the CAT scan.....nothing was noticed. BUT I still have pain!!!! it hasnt been going away!!!!!!! over the weekend i had extreme exhaustion, slept all day and had horrible lower back pain, naseau. I am bloated and have weird eating preferences...hungry one min. naseaus the next. bowel movment is not really abnormal. when the dr pushes in my stomach in certain area, there is pain. Ibuprophen isnt helping either. so now, im going for a sonogram, just to be safe and prob a colonoscopy, which ive never had done before (I am34).

does anyone else have any idea whats causing these symptoms???? anyone ever experienced this????

Id appreciate any help or light u can shed on this. A CAT scan showed nothing and I dont think I "pulled" a muscle..................It also feels sometimes like i have an ulcer to the right side to my belly button.

please celiacs.......................SOS!!!!!!!!!!!!!!!

tHANK YOU


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



Celiac.com Sponsor (A8-M):



marciab Enthusiast

I don't have a concrete answer for you, but I am having similar pain. I had a CT also which was negative. The last GI I saw for this said it was either Fibromyalgia pain or IBS. (Not that this diagnosis helps anyone, just telling you what he said :blink: ).

My pain worsens when my belly is full, so I make sure I have BM's every day. Have you tried adding probiotics to your diet ? Healthy oils ? Fiber ? Whatever it takes to keep things moving freely ...

Sorry I can't be of more help ... Marcia

2kids4me Contributor

Try eliminating dairy for several days. My daughter used to get pains like you describe. Throught inof on this site I decide to tets for lactose and/or casein intolerance .

I reintordcued dairy - she got sick . Then I gave lactose free milk - not sick! If she had gotten scik on lactose free milk then it would have been casein bothering her.

Hope this helps.

Sandy

adrews Newbie

I have that on occasion too!! I take probiotics, Omega 3-6-9, and Flax seed to help with regularity and I think that helps...dunno? My daughter had it and they just took a regular old xray and said she was 'backed up' and she needed to get cleaned out. We eliminated dairy for a while and reintroduced it slowly and that helped also. It can also be gas. I get in a lot of pain when it is stuck! For that I take Heartburn Free by Enzymatic Therapy...u take one every other day for 20 days. IT IS AWESOME!!! Helps get the gas out!!! I have found that most of my mysterious pains have been stuck gas!!! Hope this gives you some ideas! Best of luck!!!

mandigirl1 Enthusiast

Thanks guys......

I also have lower back pain......is this a sign of hyernia? stuck gas? pulled muscle? osteopenia? I am going to my doctor in a few days, so maybe then I can find out more......if anyone else has anything to add, Id appreciate it.....

btw adrews, , the heartburn enzyme......does it really help for being backed up and having gas???? or is it mostly for heartburn?

num1habsfan Rising Star

If it is blood in your stools, your stools would be black (believe me, I've had it so many times already, I know!!!). Maybe get a pelvic and stomach ultrasound if you can?? That may pick something up.

~ Lisa ~

RiceGuy Collaborator

I did have similar pains, but with the addition of a daily magnesium supplement, they are thankfully gone. Magnesium also helps with bowel function, so that's another reason you may want to try it. The kinds I'd recommend are either powder or liquid, for better absorption. There are a few different brands out there, though not all declare gluten-free. I believe the sublingual methylcobalamin (vitamin B12) I take also helps to some extent.

HTH


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



Celiac.com Sponsor (A8-M):



Viola 1 Rookie

That sounds like the illium. Food is supposed to go through the illium as a broken down almost liquid. As we sometimes don't digest our food completely, larger chunks go through and sit in the illium causing a painful spot. Eventually it will clear itself, but if you are getting contaminated it will happen again. But I suggest you go and see your doctor and check it out :)

mandigirl1 Enthusiast

What will my Doctor do to help me??????

Im not sure my dr. can help for something like this. What do you guys think????

There's no special test for this or way to pinpoint the problem, is there?????

e

num1habsfan Rising Star
What will my Doctor do to help me??????

Im not sure my dr. can help for something like this. What do you guys think????

There's no special test for this or way to pinpoint the problem, is there?????

e

I had colonoscopies and endoscopies and small bowel follow-through and an ultrasound and given stool samples and tons of bloodwork (that i dont even know what for) to test this area and nothing showed up, then again, I live in Saskatchewan....In the states, i'm sure the docs can find the problem a.s.ap. :P

~ Lisa ~

Viola 1 Rookie
What will my Doctor do to help me??????

Im not sure my dr. can help for something like this. What do you guys think????

There's no special test for this or way to pinpoint the problem, is there?????

e

No, there is no specific test for the illium. The doctor knows where it is and can finger press to judge the tenderness of it.

But more important, he can rule out the more dangerous things like ulcers and gallbladder. If these things are ruled out you can be pretty sure it is the illium causing the problems. My doctor calls it the Celiac pain. :lol: because almost all the Celiacs he sees ... and he tends to see more in this area because he is familiar with the desease and is Celiac himself, has this illium problem.

So, seeing your doctor is a precaution ... there is no 'cure' for the illium except being 100% gluten free at all times without ever getting contaminated ... which of course is impossible in this gluten filled world.

mandigirl1 Enthusiast

Im going for a sonogram tomorrow. Im also going to see my doctor next week.

Now, im guessing maybe I have an ulcer.......i was fine all day yesterday until I had stress, then that area on the side starte hurting...like a burning feeling......Wouldnt a CAT scan show this? Or, is the test for an ulcer a different one??????

I drink a ton of coffee which may contribute to the problem, although i dont feel pain after having coffee.

Im getting married in 3 months!!! This may cause stress pain.....what do guys think???

BTW, thanks for the support! :rolleyes:

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. - 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.

    2. - 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.

    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. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.