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

Would Some Of The More Advanced Members Tell Me?


alabama girl

Recommended Posts

alabama girl Newbie

For the last eight months, I have had horrible bloating on and off(feel like somebody's pumping my stomach up to my throat); sciatica,knee, hip and back pain; left lower abdominal pain on and off; constant pain in my left side like a "stitch in the side" on and off; rib sensitivity on that side; left groin pressure like a balloon is blowing up over my groin off and on; and feeling like there is a "blob" in my rectum which just started a couple of weeks ago and has been pretty consistent. I also have had anxiety, nervousness and irritability and lots of insomnia---especially if I consume sugar. I itch all over all of the time and run to urinate constantly. I've had some nausea on and off. My vision can get blurry sometimes. No blood in anything and no fever. If I consume milk, I will "dump my colon" within 1 hour of that consumption. My temps are always low---around 97.5 and I have had leukocytes in my urine without any bacteria present.

Eight months ago, I was diagnosed with diverticulitis but I am not certain this is a correct diagnosis. I get vast improvements when I leave off sugar, dairy and gluten...but also when I leave off most grains, including corn and rice and also red meat. Has anyone on this website ever had these symptomns in conjunction to celiac???? I am trying to determine if I really have had diverticulitis or if this could be gluten/lactose problem. I did stay off gluten for two weeks and saw a vast improvement in my symptoms and then started back eating it and got worse and I don't dare drink a glass of milk because I know what will happen there! Any reponses would be appreciated.


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Bama, it sounds like you could have a problem with gluten for sure & should consider getting tested for celiac disease. Have you also tried eliminating soy from your diet? When you eliminate foods, do you do one at a time or lots of them? Then when you add them back in do you do 1 at a time for say a week before adding another?

MitziG Enthusiast

I shared some of your symptoms. The urinary issues- definitely. I was running to the bathroom 40-50 times a day- doctors kept treating for UTI but nothing helped. I also had the "fullness" in my rectum and a constant feeling of pressure in my pelvis. A urogynecologist dx me with a prolapsed bladder, uterus and rectocele, and I had surgery to repair it. After the surgery he told me that he wasn't sure that was the total cause of my symptoms, as once he got in there, the prolapse was more minor than he had thought. While the rectal pressure did go away after the repair, and I quit leaking urine, the constant urgency and frequency did NOT go away, and I developed chronic pelvic pain. A hysterosalpinogram showed severe interstitial cystitis. I was also dx with celiac about the same time. My doctor gave me a list of foods to avoid to ease the IC symptoms and also said a gluten free diet helped a lot of people. He was correct. The IC is completely under control as long as I avoid any trace of gluten or casein. Other foods do not seem to aggravate it, but every person is different. Your left side pain could be related to IC, as it causes pelvic pain in varying locations and severity.

If I missed this in your post, I apologize, but have you had celiac testing? It would be worthwhile to have it done. It is important to keep eating gluten until all testing is done though, or you will likely get a false negative. The tests to do identify every celiac, but catches about 70% of them. The tests do not identify gluten intolerance. After testing, definitely try a strict gluten free, casein free diet. A lot of people get relief from their bladder issues after doing so!

alabama girl Newbie

Bama, it sounds like you could have a problem with gluten for sure & should consider getting tested for celiac disease. Have you also tried eliminating soy from your diet? When you eliminate foods, do you do one at a time or lots of them? Then when you add them back in do you do 1 at a time for say a week before adding another?

No, I've been off gluten/lactose for a couple of weeks and then I added back gluten to see what would happen and I got "worse". I don't dare drink milk because I will "dump my whole colon" within an hour of that and the only soy I am on is in my multivitamin. I think I need to get stricter with warding off all gluten/lactose for a longer period of time and see what happens.

alabama girl Newbie

I shared some of your symptoms. The urinary issues- definitely. I was running to the bathroom 40-50 times a day- doctors kept treating for UTI but nothing helped. I also had the "fullness" in my rectum and a constant feeling of pressure in my pelvis. A urogynecologist dx me with a prolapsed bladder, uterus and rectocele, and I had surgery to repair it. After the surgery he told me that he wasn't sure that was the total cause of my symptoms, as once he got in there, the prolapse was more minor than he had thought. While the rectal pressure did go away after the repair, and I quit leaking urine, the constant urgency and frequency did NOT go away, and I developed chronic pelvic pain. A hysterosalpinogram showed severe interstitial cystitis. I was also dx with celiac about the same time. My doctor gave me a list of foods to avoid to ease the IC symptoms and also said a gluten free diet helped a lot of people. He was correct. The IC is completely under control as long as I avoid any trace of gluten or casein. Other foods do not seem to aggravate it, but every person is different. Your left side pain could be related to IC, as it causes pelvic pain in varying locations and severity.

If I missed this in your post, I apologize, but have you had celiac testing? It would be worthwhile to have it done. It is important to keep eating gluten until all testing is done though, or you will likely get a false negative. The tests to do identify every celiac, but catches about 70% of them. The tests do not identify gluten intolerance. After testing, definitely try a strict gluten free, casein free diet. A lot of people get relief from their bladder issues after doing so!

No, I haven't been test for anything yet. I have wondered about a rectocele but I have so many other symptoms going on that really point to some kind of allergic/histamine type reaction, but it is all so confusing.

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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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
      @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.