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

Need Help


gary

Recommended Posts

gary Rookie

If anyone has any answers at all for me I would really appreciate it. I have been having severe digestive problems for over 2 years now. When it first began I would have periods where I would get all cramped up and not be able to pass food through and then periods where everything was pretty much normal. I've been tested for jsut about everything like Crohn's, Ulcerative Colitis, Thyroid, and almost anythign else you can think of and nothing would show on the tests, so they have just given me the IBS tag. By now I'm to the point that I constantly have problems passing things through and not to be gross or anythign but my stools are almost flaky and crumbly all the time. My doctor told me to eliminate all wheat and dairy just to make sure it is not a food allergy and that seemed to help for a while but now I'm getting back to where I was before. I know milk and wheat products have to bother me because I've had instances where I was feeling good and passing things through and then ate something with wheat or milk in it and sure enough cramped back up and couldn't pass things through within a couple of hours. The doctors nor I could figure anything out and nothing seemed to make sense until I was recently introduced to a friend with Celiac's disease and she thinks everything seems to fit since I was doing better after cutting down on wheat and dairy. But is it possible for Celiac's sufferers to have contstipation instead of diahreah? Does anyone else here have similar problems? The biggest problem I face now is that I recently got married so I'm off my father's insurance and cant' afford my own. so pretty much I'm trying to research these things myself which is really hard. Oh, by the way all my blood tests and Small Bowel that usually diagnose celiac's were normal however, I figure that doesn't mean much since my friend with it had completely normal tests for 8 years before it actually showed things. If anyone has any advice or help I would really appreciate it.

Thanks,

Gary


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



Celiac.com Sponsor (A8-M):



mn farm gal Apprentice

I think the true test here would to be totally gluten free and maybe dairy too. I have been sick for over 15 years and just got really bad again the last7 months. Someone suggested for me to read up on Celiac and I did. Wow! I then had the blood work done all neg. but started the diet the same day and boy my life is changing for the better everyday. So for me the test don't have to say pos for you to do the diet if its going to make you feel better. Good luck!

wacky~jackie Rookie
If anyone has any answers at all for me I would really appreciate it. I have been having severe digestive problems for over 2 years now. When it first began I would have periods where I would get all cramped up and not be able to pass food through and then periods where everything was pretty much normal. I've been tested for jsut about everything like Crohn's, Ulcerative Colitis, Thyroid, and almost anythign else you can think of and nothing would show on the tests, so they have just given me the IBS tag. By now I'm to the point that I constantly have problems passing things through and not to be gross or anythign but my stools are almost flaky and crumbly all the time. My doctor told me to eliminate all wheat and dairy just to make sure it is not a food allergy and that seemed to help for a while but now I'm getting back to where I was before. I know milk and wheat products have to bother me because I've had instances where I was feeling good and passing things through and then ate something with wheat or milk in it and sure enough cramped back up and couldn't pass things through within a couple of hours. The doctors nor I could figure anything out and nothing seemed to make sense until I was recently introduced to a friend with Celiac's disease and she thinks everything seems to fit since I was doing better after cutting down on wheat and dairy. But is it possible for Celiac's sufferers to have contstipation instead of diahreah? Does anyone else here have similar problems? The biggest problem I face now is that I recently got married so I'm off my father's insurance and cant' afford my own. so pretty much I'm trying to research these things myself which is really hard. Oh, by the way all my blood tests and Small Bowel that usually diagnose celiac's were normal however, I figure that doesn't mean much since my friend with it had completely normal tests for 8 years before it actually showed things. If anyone has any advice or help I would really appreciate it.

Thanks,

Gary

I have just recently been researching celiac disease and have found this message board to be very helpful. I am currenly being tested and have had a negative blood test. I'm not sure if I'll have a biopsy or just go gluten-free.

Several of the posts that I have read here tell of people having either D, C or both alternating. I personally have a problem with C. I also have noticed that sometimes gluten doesn't bother me and other times I have very painful stomach cramps and bloating and the next day severe knee and back pain. Once I tried a low-carb diet and felt wonderful so I feel that gluten is probably a problem for me.

Seems to me like you should try 100% gluten-free to see how you feel and don't worry about testing unless you have other problems. I know it's difficult with no insurance. :) Keep researching and good luck.

mle-ii Explorer

Gary, is your constipation symptoms at all like the symptoms in this thread?

Open Original Shared Link

Have you had a colonoscopy? Did they take biopsies of your colon?

Mike

Deb B Newbie

Gary,

I tested negative to a blood test. I've had IBS symptoms for 2 years, with severe painful bloating-for a while it was once a week--and frequent diarrea and intermittent constipation. Constipation was usually just skipping a stool for one day. I couldn't identify any one food that seemed to provoke symptoms and then it dawned on me it might be something I ate all the time. Finally, I read about wheat and decided to cut out the wheat and I felt better in about 3 days. I already consumed very little dairy. I've been on and off wheat for about 6 months, usually unintentionally, but sometimes because I'm not convinced since I never got a positive diagnosis. I still get diarrea, usually after consuming food I didn't prepare. It often takes a day to a day and a half to kick in. Milk products, especially industrial additives like powdered milk or whey can really affect me too.

I had had a colonoscopy shortly before the symptoms got strong enough for me to notice (about 2 years ago) so I was sure I didn't have a serious illness. I also wonder if that procedure is what brought it on. I was also tested for parasites since my daughter had had pinworms. My energy levels are pretty good and except for 2 instances of allopecia (isolated hair loss that grows back) in the past year, I can't say I'm unhealthy. I'm 46 and do not drink and consume very little alcohol and am active physically. I feel I'm much more energetic than most people my age.

When I went to get tested I told the internist that I had been avoiding wheat for over 4 months since I had read that that could affect blood test results. My negative lab results did not convince her I had any intolerance. She prescribed a time-released anti-spasmodic that was so strong I felt drugged. I took it once or twice and said no, way. I'd rather work with modifying my diet.

But of course I was tempted to eat wheat again. I end up having diarrea for about 48 hours approximately 1- 1.5 days after consuming it. I have weird looking stools, diarrea with undigested food that looks like sawdust, bubbly effervescent watery stuff, yellowish watery stuff. When I avoid wheat my stools are usually normal. Taking enzymes helps --maybe against dairy intolerance-- and a nutritional powder called "green magic" really helped me. It contains wheat grass juice, but didn't seem to bother me. I just read that wheat grass juice does not have gluten.

It's really hard to avoid eating wheat when eating prepared products or going to a restaurant. I know that when I eat fresh salads, brown rice, steamed vegetables that I've prepared, I'm fine. By changing my diet, I've gone up to 2 weeks without any symptoms. I need to have normal BMs 2-3 times a day to feel good.

When I'm symptom free for a while, I think maybe it's all in my head, but I try to remember how inflamed I felt (a burning like feeling) and that when I stopped eating wheat I felt relieved so quickly.

I'm going to see a holistic doctor soon who works a lot with diet and see what she thinks. I doubt the internist at the HMO will take me seriously since I tested negative. Elsewhere on this site, someone suggested getting a test done by Enterolab that uses stool tests that may be more reliable.

Open Original Shared Link

I don't buy the IBS diagnosis since I eat very well and am overall very healthy. My mom died of colon cancer and others in my family have constipation problems.

Everytime I think I can eat wheat I end up getting sick so who needs a diagnosis? It's just hard to figure out exactly what makes you sick since there's often a delayed action. I've gotten so fed up that I've gone on fasts, eating only brown rice or brown rice and steamed vegetables for a couple of days. I even tried a water fast for 3 days. Guess what? When I don't eat I don't have any symptoms.

Good luck and let me know if you find anything out...I'm just as much in the dark as you.

GFBetsy Rookie
But is it possible for Celiac's sufferers to have contstipation instead of diahreah?

My mom was always constipated. I think it took about 2 months after she went off gluten for her BM's to normalize - and she was so surprised! She was so used to it that constipation just seemed normal to her! So the answer to your question is: yes.

Also, when you went off wheat before, did you go gluten free (avoiding barley, rye, and oats as well?) or just "wheat" free. Lots of people with wheat allergies (which is very different from celiac) can tolerate spelt, which is a big NO NO for people with gluten intolerance. If you were still eating gluten while you were wheat free, that may explain why you were better for a while and then crashed again.

Best of Luck figuring things out!

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):
  • Who's Online (See full list)

  • 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.