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

Introduction And Thanks

Mskedi

Recommended Posts

Mskedi Newbie
Mskedi
Posted

Last week my sister was diagnosed with Celiac Disease. This was no surprise considering my grandmother had it and my cousin was diagnosed a few years ago. Just about everyone in my family complains of digestive problems and, because of that, several relatives who have had negative blood results have chosen to avoid gluten anyway. They report great improvement overall.

So, when my sister was diagnosed, I decided that I should cut gluten out of my diet despite my negative blood test a few years back. My grandmother had several negative blood tests, and, if I remember correctly, so did my cousin, so my blood test would hardly be definitive. I figure it simply isn't worth it to have the chance of letting things develop to what they did for them, and if I successfully cut all the gluten out, I can never be diagnosed. Besides, by going gluten-free I can share recipes and products with my sister... I really don't want her to have to make this big change alone. My husband fully supports this decision, and had actually been bringing it up long before my sister's diagnosis -- just about every time I complained of having a stomach (technically intestinal) ache after eating.

Over the past week, I have relied heavily on this website, and I wanted to express my thanks to all of you who have posted information, support, recipes, and experiences. It's definitely made this switch seem much more realistic and doable than it sounded at first.

I think I've been most surprised by the number of symptoms related to Celiacs that I was unaware of. Digestive trouble was obvious, and anemia and its related easy bruising also made sense, but depression and skin problems? I never would have thought of those. It will be interesting to see if going gluten-free helps at all in any of those areas. I am most anxious to see improvement in my anemia. I have never once had a normal iron count. I even had a doctor tell me that "some people simply can't absorb iron very well" when no amount of iron supplements helped. After about six months of this, I'll have a blood panel done and see if there has been any improvement.

After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

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

Celiac.com Sponsor (A8-M):


Mtndog Collaborator
Mtndog
Posted

I'm SO glad that you were able to find the help and support you needed here!

Welcome, welcome, welcome!

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome, I am another blood negative celiac so I know how difficult the diagnosis process can sometimes be. As you have seen you found a great place for info and support. If you have any questions or just need to vent we are here for you. I hope you are feeling better soon.

ranger Enthusiast
ranger
Posted

Welcome! This forum has helped me a zillion times. At first, I just read and read. It not only taught me the ins and outs of going gluten-free, but also kept me from feeling so alone in the world. People don't know much about celiac's- I know I didn't before I got it. Hang in there and feel free to ask questions- even if you think they're dumb ones!

K-Dawg Explorer
K-Dawg
Posted
After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.

Hey - WELCOME!

I know what you mean -- I am newly diagnosed and this board is SO helpful. Can't wait to hear some of those vegetarian recipes!

Good luck

  • 4 weeks later...
Mskedi Newbie
Mskedi
Posted
  • Author

I thought I'd update since I've been just about a month gluten-free now.

The difference is pretty drastic. First off, my scalp isn't itchy and scabby anymore at all. Who knew? Also, digestive troubles are a thing of the past but for two recent accidental glutenings (the reactions to which were so severe that I'm pretty sure I made the right decision). I feel GOOD, and now that I've successfully made a gluten-free flour tortilla (I always said I liked corn ones better, and then the minute I couldn't have flour ones I started craving them), I don't feel deprived in the least. I'm actually having a lot of fun messing around with recipes and de-glutenizing them. It probably helps that the teaching year doesn't start for another month, so, except for the classes I'm taking, I've got a good chunk of the day to play around in the kitchen. I think I'll have mastered a pretty good set of yummy staples by the time I have to start packing my lunch again.

I've been reading a lot and getting more informed, and my sister is doing really well with the diet. So far, so good.

Mskedi Newbie
Mskedi
Posted
  • Author

Oh! And I've been sleeping through the night! I haven't done that in ages!!

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Happy to hear your family is doing so well. I just wanted to welcome you to this corner of the Celiac world. Its a good place to be!

Archived

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

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

  • Member Statistics

    • Total Members
      133,050
    • 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.