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 A Little Guidance

CecilyF

By CecilyF
in Coping with Celiac Disease

Recommended Posts

CecilyF Rookie
CecilyF
Posted

I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

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

Celiac.com Sponsor (A8-M):


StacyA Enthusiast
StacyA
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Hi Cecily. Over a hundred people have viewed your post, but no one has replied. I think it may be because you're asking such a global question, and because you're in the 'products' section. I'm new to gluten-free, so I don't know all that much, but I wanted you to have someone reply. 6 days is very early into gluten-free, and if you've been sick a whole year it's going to take time to heal - therefore I bet you won't exactly be able to tell yet if it's just part of the ups and downs of healing or if you've been exposed to gluten. The 'coping with' and 'post diagnosis' forums have a lot of threads that echo some of your frustrations and might help you figure out what's going on or at least not feel crazy or alone. From what I can gather, everyone is different in how quickly they respond to gluten, and it will take time for you to figure out how your body responds. Check out those sections. - Stacy

Wolicki Enthusiast
Wolicki
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Did you have dairy with that meal? It's tough to do dairy for most of us until we are healed.

jrc121 Newbie
jrc121
Posted

Hmmm. It's quite possible. Since you're new to the game you need to prepare yourself to expect being glutened a few times, unless you get really lucky and avoid all cross contamination possibilities and hidden glutens. I would probably avoid what you ate at least for a while just to be safe, unless you're 100% sure of no gluten (say if you ate fruit or something). Search the brand name of what you ate online and/or call the company about gluten content. Could also be that you can't handle soy or corn.

New-To-This Rookie
New-To-This
Posted

From one newbee to another. My husband got so sick he ended up in the hospital. Have you gotten a new, toaster for your gluten free breads? A new cutting board? A new frying pan? Etc... You can get glutened at home by not replacing the MANY items that you use to prepare your meals. Anything wooden or scratched needs to be replaced. Yes it can and will make you sick if you don't. You could be contaiminating yourself unknowingly. It took my dear husband ending up in the hospital for us to realize, yes, even our cooking untensils can make him sick if they where used with wheat products in the past! I just had the scariest week of my life. My husband had such sever intestinal cramps Saturday the 12th I had to take him to thw hospital and he was in so much pain, I thought I was going to lose him. It took 3 shots of morphine to get the pain to where he could tolerate it. I don't mean to scare you, I just want to make sure you realize how serious this can be.

Also here are a few web sites you might find handy:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There are tons more. I have used and saved a few of these in my favorites for my own personal use. I have even foud lists ingredients to watch for on your food labels, and before printing these lists I would have bought products that would have made my husband sick all over again. An example MSG has at least 20 differnet names and if you didn't know that you could eat something and get sick and have no idea why. And Gluten bi products and products have names you would not realize have gluten in them. Research is you best friend and your guide to preventing getting glutened again.

The people on this web site are absolutely wonderful, without them I don't know what I would have done. I just hope this information is as helpful to you as theirs has been to me! :D

New-To-This Rookie
New-To-This
Posted

Oh and I forgot, if you see a name of a book listed anywhere see if you can check it out of your local library. I have checked out at least a dozen books so far and gotten tons of information. Do realize that some of this information is old but still worth the read. I have found a few I want to buy for my personal library at home after reading several I didn't find very interesting. I found a wonderful cookbook too.

I wish you the best of luck!

CecilyF Rookie
CecilyF
Posted
  • Author

Thank you all so much! Stomach cramps subsided after that one bad day. I feel like a new woman after being gluten free!!

I appreciate all the info. What a life-changing experience this has been.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,051
    • Most Online (within 30 mins)
      7,748
    Rima
    Newest Member
    Rima
    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

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      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
      Fruits & Veggies

      By knitty kitty · Posted

      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
      Positive biopsy

      By knitty kitty · Posted

      @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
      Positive biopsy

      By trents · Posted

      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.
×
×
  • 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.