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

Looking For Others That Have Both Celiac And Crohn's Diseases


gluten-no-more

Recommended Posts

gluten-no-more Newbie

I was diagnosed in 2002 but two years later the doctor's realized the Crohn's disease manifest itself as Celiac. Once I got my Crohn's under control (through surgery), I eventually started having problems again. Doctors screened me again and everything was inconclusive. Finally, I was sent to the Mayo Clinic in Rochester and was confirmed as having both Celiac and Crohn's. So, here I am again trying to do the diet but yet, I'm still faced with the original frustrations I had when I was diagnosed the first time... lack of taste, the inability to have a sandwhich because I hate the bread, feeling like an outcast among my friends. Granted, there are two frustrations that are no longer an issue... the dream of having gluten free beer (which I tried last night - yummy) and the lack of local options - our grocery store has a fairly large section of gluten free options. In fact, they went through the entire store and put little tags on everything gluten free.

Also, I'm looking for some viable options for breads and looking for someone to tell me how to make a grilled cheese with gluten free bread.


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



Celiac.com Sponsor (A8-M):



hannahp57 Contributor

I dont have chron's though i have been having stomach issues lately and wonder if it could be the cause. tell me more about it and your symptoms please.. it may just be CC for me but its been a week and no progress so im exploring possibilities.

also i have made grilled ham and cheese with gluten free store bought bread and homemade. the store bought does not brown it just becomes crispy so that makes it easier once you figure this out. homemade bread that i used required more butter than what i was used with regular bread...and i also use real butter now instead of margarine so that would have something to do with it. the best thing is to apply a thin layer and let it cook through..if i pick up the bread before the butter is cooked on it i always always mess it up. it gets mushy and wont cook right for some reason

it just takes getting used to! good luck

Oh yeah kinnikinnick and pamela's have wonderful bread mixes. i have used and LOVED both.

gluten-no-more Newbie
I dont have chron's though i have been having stomach issues lately and wonder if it could be the cause. tell me more about it and your symptoms please.. it may just be CC for me but its been a week and no progress so im exploring possibilities.

also i have made grilled ham and cheese with gluten free store bought bread and homemade. the store bought does not brown it just becomes crispy so that makes it easier once you figure this out. homemade bread that i used required more butter than what i was used with regular bread...and i also use real butter now instead of margarine so that would have something to do with it. the best thing is to apply a thin layer and let it cook through..if i pick up the bread before the butter is cooked on it i always always mess it up. it gets mushy and wont cook right for some reason

it just takes getting used to! good luck

Oh yeah kinnikinnick and pamela's have wonderful bread mixes. i have used and LOVED both.

You'll have to excuse some of the 'grossness' I have to share with you but it's necessary in order to answer your questions. The main symptom is stomach pain. It's not necessarily a cramping pain - although I get that too sometimes. My stomach pain is usually an upper stomach pain. It's piercing and it shoots through my back. You can also describe it as a gnawing feeling. I have diarrhea about 4-5 times a day. Most of the time the diarrhea is a very thin light color - almost mucus like. There have been times where I was passing blood (which always lands me in the ER). In 2002, I had a blockage which felt like waves of pain shooting from my belly button to my groin. I have a high tolerance for pain so when I was screaming out in pain my then fiance knew it was bad. He had to carry me into the ER because I was in such pain that I couldn't walk. I was also very anemic. At your very worst, you start dropping a lot of weight because you are scared to eat.

I know it doesn't help much because both disease have very similar symptoms but I would recommend you ask your doctor for a colonoscopy AND endoscopy. Then have him show you a couple pictures of your intestines from your colonoscopy AND endoscopy along with a photo of intestines inflicted with Crohn's. That may help.

Thanks for the tips on grilled cheese. I'll try it tomorrow night for dinner since my husband is teaching class and can't make it home for dinner.

hannahp57 Contributor

Thanks for the info and dont worry about grossing me out :P i've had bad days (weeks) too

my symptoms are not quite so severe..i havent ever passed blood. i have been having breath taking stomach pain in the upper right side but it doesnt spread to my back. it just burns and feels like a knife being twisted around. and D but im not sure about that.. that hasnt been chronic so much. i will be talking to my doctor after i finally get my dentist appointment out of the way.. i was down thirty pounds before diagnosis and my tooth enamel was weakend= two broken teeth in back :(

Archived

This topic is now archived and is closed to further replies.

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

    • Total Members
      133,016
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.