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

Waiting Stinks.


NotMollyRingwald

Recommended Posts

NotMollyRingwald Apprentice

Warning: somewhat irrational, kinda childish, mini vent forthcoming. Read at own risk. (Lol)

I've started back eating gluten, going for at least 2 pc of bread a day, while waiting for my GI appt (initial consult). Five days in and I'm in a funky place...the appt is still 3 wks away (well, 19 days, 13hrs, 28 min...but who's countin?) and I just wish I had a magic time portal that would whisk me away to May 17. My brain is foggy, I'm weak, I cant keep a thought in head, my stomach aches, my belly is distended, I could out fart my husband, (after a night of beer, nachos, and bean dip,) all I want to do is sleep. The tragic part is, I'm so afraid the GI will dismiss me, no endo, no additional testing, no answers...and then I'll be backto square one. Either way, more waiting and more gluten... Anyone have a magic wand, or something hard I can beat my head against?!?! Ahhhhhhhhhh!!!!!! \\ END RANT \\

Ok, ok, just had to get that out of my system. :)


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Oh, we are very familiar with the "I'm doing a gluten challenge and this stinks" rants. :lol:  (but people use more salty language than "stinks")

 

You absolutely get to to rant, vent, scream, whine and throw stuff around the yard....Oh., and punch pillows (just not the hubs)

 

This is a brave thing you are doing and not many could survive it (I couldn't)

 

Some enlightened docs will diagnose based on the symptoms that come roaring back on gluten and a positive gene test.

 

Nope, sadly no magic wands. Sorry, kiddo.

 

In the meantime, we can be your cheerleaders.

 

smileys-cheerleading-755332.gif Go Amy, go Amy, go Amy and here's a ((hug))

Celiac Mindwarp Community Regular

Hang in there.

I lasted 3 weeks, and was very unwell by the end of my challenge.

I know it is horrible to think you might go through this and not get a diagnosis, but even if that does happen, there may be a silver lining (though you might not think so right now...). Your reaction to eating gluten is evidence to doctors. I wrote down my symptoms and my GI used it for a diagnosis of non celiac gluten intolerance. Secondly, you may well find it easier to stick to a gluten-free diet if you don't get a celiac diagnosis. Plenty of us are NCGI. My life has transformed gluten-free.

Wish I had better news to get you through right now. Like Irish says, we've been there and will shout from the sidelines.

NotMollyRingwald Apprentice

Lol @the "salty" language. I must admit, there have been a few words unsuitable for children out of my mouth lately. Hehe

Thanks for the support and hugs!! I just keep repeating that line from Finding Nemo...just keep swimming, just keep swimming, just keep swimming (repeat x400000000)...May 17 be here soon (I hope!)

NotMollyRingwald Apprentice

"I know it is horrible to think you might go through this and not get a diagnosis, but even if that does happen, there may be a silver lining (though you might not think so right now...). Your reaction to eating gluten is evidence to doctors. I wrote down my symptoms and my GI used it for a diagnosis of non celiac gluten intolerance. Secondly, you may well find it easier to stick to a gluten-free diet if you don't get a celiac diagnosis. Plenty of us are NCGI. My life has transformed gluten-free."

Great perspective, thanks :)

Adalaide Mentor

In the end, no matter whether you get the support of doctors or not, you now know without a doubt that gluten is poison to you. That is something at least. And yes, just keep swimming. Because from your signature I know this may help, always remember... when life gets too hard to stand, kneel.

IrishHeart Veteran

Lol @the "salty" language. I must admit, there have been a few words unsuitable for children out of my mouth lately. Hehe

Thanks for the support and hugs!! I just keep repeating that line from Finding Nemo...just keep swimming, just keep swimming, just keep swimming (repeat x400000000)...May 17 be here soon (I hope!)

 

 

You have a few necessary ingredients for survival--a sense of humor and great faith.

 

Tough times don't last. Tough people do.

 

Hang in there, hon. We're here for you.


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



Celiac.com Sponsor (A8-M):



NotMollyRingwald Apprentice

" always remember... when life gets too hard to stand, kneel".

AMEN a 1000x to that!!!

NotMollyRingwald Apprentice

"Tough times don't last. Tough people do.

Hang in there, hon. We're here for you."

You are so right, "I can do all things through Christ, who strengthens me." Most important truth. This board has been such a blessing to me, I am lucky that my husband is supportive (albeit clueless), but there is NO sub for the support/advice/shoulder of those who have been there/done that/got the shirt!!

Celiac Mindwarp Community Regular

We have the best selection of shirts here!

Stick around and we can help you find yours :)

IrishHeart Veteran

Her shirt today would probably read:

 

"This is  bull$&#.! "

NotMollyRingwald Apprentice

Hahahahaha!! Right now, mine would read: "Warning: atomic fart zone"

IrishHeart Veteran

Hahahahaha!! Right now, mine would read: "Warning: atomic fart zone"

 

 

:lol:  you're adorable, even though you feel like crap. Kudos!

1desperateladysaved Proficient

Hi Amy,

 

Okay, so when you can no longer kneel, be carried.  See my profile?  Isaiah 43 and 44 are encouraging to me lately.

 

"You are precious."  "I love you," the Lord says.

 

I can keep going.  Please keep going too.

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,024
    • Most Online (within 30 mins)
      7,748

    Sunset Blue
    Newest Member
    Sunset Blue
    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.