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

Celiac, Crohns, And SIBO =0(


ScarlettsMommy

Recommended Posts

ScarlettsMommy Explorer

Well a few weeks ago I got diagnosed with Celiac Disease, Crohns Disease, AND SIBO (Small Intestinal Bacterial overgrowth) Im still pretty overwhelmed and still sick. I have been eating gluten free, and still feel sick, so I dont know if this whole time it was that making me sick or the SiBo. Im on my second round of antibiotics for the SIBO, (b/c the first months worth didnt do anything), and I just started taking Acidodiphilus chewables to boost things along. I am waiting on my bloodwork results so I can start the 6MP for my Crohns. I just need somewhere to vent, b/c having all 3 of these things I dont know which one is actually making me feel like something is rotting in my stomach. I am young...only 24 and have a 2 year old and married, and I feel like my life is already ruined b/c of my stomach. Is there anyone on this board who has these problems? Or at least both crohns and celiac? I need help determining why I feel sick still...I want to be able to have a normal life again and start working again. I cant b/c Im still sick everyday it seems to my stomach.

Thanks for lending me your ears =0)


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



Celiac.com Sponsor (A8-M):



stanleymonkey Explorer

my hubby has crohns and daughter has celiac. I've seen how miserable it makes them both, once you get rid of the bacterial overgrowth hopefully you'll be able to concentrate in eating the right things to help your hut heal. My hubby had a bowel resection at 15 and had his gallbladder removed a year ago. If you do what the gastro says and dieticians regarding diet you should feel better. When my hubby eats what's is supposed to he never gets flare ups. I know it seems like the end of the world right now, but at leastyou know now rather than 20 yrs further down the line, and you'll be able to start healing and get on with a happy healthy life

sending lots of hugs - been up so many nights with either my hubby or daughter in pain it's hard enough to watch I can't imagine going through it every day

  • 2 weeks later...
Syl Rookie

Well a few weeks ago I got diagnosed with Celiac Disease, Crohns Disease, AND SIBO (Small Intestinal Bacterial overgrowth) Im still pretty overwhelmed and still sick. I have been eating gluten free, and still feel sick, so I dont know if this whole time it was that making me sick or the SiBo. Im on my second round of antibiotics for the SIBO, (b/c the first months worth didnt do anything), and I just started taking Acidodiphilus chewables to boost things along. I am waiting on my bloodwork results so I can start the 6MP for my Crohns. I just need somewhere to vent, b/c having all 3 of these things I dont know which one is actually making me feel like something is rotting in my stomach. I am young...only 24 and have a 2 year old and married, and I feel like my life is already ruined b/c of my stomach. Is there anyone on this board who has these problems? Or at least both crohns and celiac? I need help determining why I feel sick still...I want to be able to have a normal life again and start working again. I cant b/c Im still sick everyday it seems to my stomach.

Thanks for lending me your ears =0)

I feel your pain Scarlett. Although I was diagnosed with Celiac's disease a year and a half ago, I too have continued to suffer the complications of the disease. I've also been dealing with SIBO along with a newly diagnosed Lyme's disease as well. I'm also only 25 years old myself and understand how rough it is when you once felt healthy, but now so sick. I know just how you feel, and often times it's hard not to just give up, but there's always a light at the end of the tunnel! Adhering to a diet that your body can tolerate is the best advice I could possibly give you. If you're not already following the SCD diet (Simple Carbohydrate Diet) then I would recommend you check it out at: Open Original Shared Link

You can also check out: Open Original Shared Link This is Dr. Siebecker's website, someone who has dedicated much of her profession to treating SIBO. Knowledge is the key to dealing with SIBO, Celiac's, and then some. I would also try to find a support group in your area and lean on you friends and loved ones when you feel down. This forum is also always a great place to find those who are in the same boat of you and can offer great advice.

I wish you well and hope that you find the strength to get through this!

This diet is crucial in recovering from SIBO and would most certainly help both Celiac's and Crohns as well.

domesticactivist Collaborator

I'm sorry you are feeling so sick. :( Have you looked into the GAPS diet? It is based on the SCD mentioned above but has more of a focus on probiotic foods and has a phased approach. I (and others) have posted tons about it on here and elsewhere. Definitely check it out as it is aimed at correcting the imbalance of gut flora as well as "healing and sealing" the gut.

  • 5 weeks later...
Carebear Apprentice

Well a few weeks ago I got diagnosed with Celiac Disease, Crohns Disease, AND SIBO (Small Intestinal Bacterial overgrowth) Im still pretty overwhelmed and still sick. I have been eating gluten free, and still feel sick, so I dont know if this whole time it was that making me sick or the SiBo. Im on my second round of antibiotics for the SIBO, (b/c the first months worth didnt do anything), and I just started taking Acidodiphilus chewables to boost things along. I am waiting on my bloodwork results so I can start the 6MP for my Crohns. I just need somewhere to vent, b/c having all 3 of these things I dont know which one is actually making me feel like something is rotting in my stomach. I am young...only 24 and have a 2 year old and married, and I feel like my life is already ruined b/c of my stomach. Is there anyone on this board who has these problems? Or at least both crohns and celiac? I need help determining why I feel sick still...I want to be able to have a normal life again and start working again. I cant b/c Im still sick everyday it seems to my stomach.

Thanks for lending me your ears =0)

I'm so sorry to hear you're overwhelmed!!! I was diagnosed 3 months ago, and I definitely understand all the stresses with changing your diet and still feeling ill. I'm celiac, and my husband has crohns, so we eat a low residue gluten-free diet when we eat together (which is pretty much always). I still feel sick often, as I'm finding I react to other things that are not the "typical" gluten grains. The family of grains that contain the "bad" glutens also include cane sugar, corn, and rice (Open Original Shared Link) . I can only have white rice and potatoes without experiencing awful symptoms.

Some advice from a celiac (me): Watch other grains, fructose (after I am glutened I become fructose intolerant for a week or so), and DAIRY (both the lactose and casein can cause reactions). Also "gluten free" does not really mean anything - for example, gluten free chex are made on shared lines and make me so sick! I eat a lot of eggs, tofu, and peeled, cooked veggies. Also, peanut butter ;) And I make my own bread mix and bread - it's super quick once you get a routine! Hang in there!

Some advice from a "crohnie" (the hubbie): Once I went on a low residue diet, it took about 3 months for the joint pain and the constant gut pain to die down. Buy an electric steamer - saves loads of time! I am also lactose intolerant, and I feel better eating gluten free anyway.

Ginger7 Rookie

I'm sorry to hear this and you must be overwhelmed. You might also start tracking your food, symptoms and bowels. There is a neat app called GIMonitor, it's free. It tracks and graphs your symptoms, plus it has a social button. They refer to it as ButtBook, instead of FB. You might find great support from here and there. It's nice to find a forum where you can't possibly gross anyone out and rather they want to listen and help. I believe you can get everything under control. It will take time, give your body time to heal. Just like after having a baby, it takes awhile to recover. Your intestines didn't get this way overnight. Start simple with foods, don't make it a lot of work and try to rest, though I'm sure that's tough (I have 3 kids myself, 8, 2 and 5 months)!

livelifelarge24 Enthusiast

I don't have Chron's but I have a close friend that does. I can relate to feeling like life is getting ruined by all these symptoms and issues. You will really find out who you're friends are through this- I have one who makes me feel like dirt anytime I can't make a social engagement because I've been accidentally glutened and then on the other hand a few who did a ton of reading and research and then cooked a dinner geared for me soni wouldn't feel left out. I don't have much to offer in helping you differentiate your symptoms but definitely don't underestimate the effect that antibiotics themselves have on making you feel like garbage!


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



Celiac.com Sponsor (A8-M):



heidi g. Contributor

Antibiotics is what triggered my stupid disease. I feel like crap constantly as well so I know how you feel. I had ulcerative colitis when I was younger so I can imagine the crohns pain and celiac sickness on top of it. I feel like my world is over because I can't finish school in this condition. To top it off I have an over hyper 3 year old. And when you feel like puking your guts out its not easy keeping up with him. Someone I know has crohns and they said the best thing to eat to calm and heal your tummy is white rice. Rice and steamed vegetables barely affect me in just so bad at keeping up eating it. I always end up eating stupid chips it something and suffer all day. Sometimes life is unfair and you never really get to choose your events in life. You only choose how to handle them. I accept that I'm meant to feel like garbage all the time but I won't let it stop me from enjoying my life. I guess if I have to go to school feeling like this than so be it. I'm going to keep trying to find a way to manage my symptoms. I'm 21 and young too :( suffering only makes you stronger. It will be bring you down but you can always get back up!

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.