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

Symptoms Not Disapearing- Ibs?


alex*iustaspira

Recommended Posts

alex*iustaspira Newbie

I haven't been able to find any other threads about IBS on here, so I'm sorry if there's already another post on this! But I've had celiac for about 6 months, was diagnosed just before my 20th birthday, and I've be extremely careful about cutting out gluten. I'm also lactose intolerant and I make sure to take the pills for it. The thing is I'm still getting the symptoms, so I think I have IBS. I mentioned it to my doctor and they seem to just focus on the whole celiac thing so I have no clue if I have IBS or not. I've heard that people feel better soon after they cut out gluten, however, I haven't really felt much better at all. I'm just wondering if anyone else's symptoms have taken as long to disapear? I'm praying that I don't have IBS so if anyone has any advice that would be great!


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

IBS is a symptom, not a diagnosis, in spite of what some doctors try to tell us. You might want to ditch the dairy for now as many of us are lactose intolerant until we have healed (and some can never digest dairy products).

Lactaid tablets never did anything for me. I am able to use Lactaid milk and probably didn't start eating cheese until I was gluten-free for about 9 months and then it was hard cheeses like cheddar. One of these days I'm going to test dairy good but I want a couple of days when I know I'm going to be home. :P

IrishHeart Veteran

Irritable bowel is " a collection of symptoms"--and it is a diagnosis based on symptoms of the LARGE intestine, not the small intestine. I'm with Sylvia--ditch the dairy for a while.

Lactose intolerance--secondary to celiac--is transient in the majority of celiacs. (I hope for me too--I miss cheese! :P )

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant.

This may cause bloating, stomach cramps, diarrhea, etc.

(does this sound like the "IBS" you think you have?? )

After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

Unfortunately, most of us learn there is no timetable on gut recovery. Give up the dairy and hang in there! :) See if your symptoms lessen.

Marilyn R Community Regular

I agree with Sylvia, try eliminating dairy for awhile. If that doesn't work, try eliminating soy and then corn and all derivitives. Good luck, it's a journey. Hope you feel better soon!

Kim69 Apprentice

I hope giving up dairy works for you. I tried using lactate milk and felt no better. I then switched to rice milk and felt no better. Now I am back to cow milk and feel no worse.

I agree that you probably have food sensitivity issues. For me, removing fructose foods was the best improvement after removing gluten.

My new gastroenterologist says that I may have IBS and fibromyalgia (we are working towards a diagnosis). Both of which are difficult to diagnose and dont have treatments anyway. I am just over 1 yr post Coeliac diagnosis.

sb2178 Enthusiast

Yeah, IBS isn't really one particular problem. Whenever they test a group of people with "IBS" for a particular problem like celiac disease, or fructose intolerance, SIBO, or casein/lactose intolerance, they always get a % of people who are positive for that particular problem.

A strict elimination diet might be worth the effort. You start off with a few plain foods (rice, lamb, yellow squash) and then add one or two new foods per week. Keep a diary and see if you notice any changes with particular foods. There are various options out there if you want to try a more comple regime. It's a pain, but it's the only really really reliable way to determine which foods are causing problems. It's very restrictive, so if you're going to be testing a lot of foods, it might be helpful to find an RD/MD who can guide you through it while still eating enough nutrients.

dilettantesteph Collaborator

You may be a super sensitive celiac, reacting to processed foods. Try eating just produce and meat for a couple of weeks and see if that works. You can try adding a few processed things later.


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



Celiac.com Sponsor (A8-M):



  • 11 months later...
alex*iustaspira Newbie

Thank you for all your replies, even though I haven't even seen them until just now! Its been about a year and nothing has changed; I'm on the FODMAP diet now and yes I've been cutting out dairy most of the time for the past year. My doctor told me that I probably do have IBS, or IBS symptoms I guess, so I feel like I'm on my own now since my gastroenterologist discharged me. I've started to develop stomach pains now so I'm really lost.. has anyone else with IBS managed to control your symptoms? I feel like its never going to happen!

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.