Jump to content

  • 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):

When Your Upper Gi Guy Bets You A Free Endoscopy...

harleyridnusmcbrat

Recommended Posts

harleyridnusmcbrat Newbie
harleyridnusmcbrat
Posted

That's pretty much a bad sign, right? Gracious, this journey is long, tiring, and frustrating.

For starters, at 16 I started to get bouts of nausea - those bouts turned into me throwing up at random in the mornings and then hitting a peak that landed me in the hospital at 19 after having been put on Reglan at 18 for a misdiagnosis of GERD. They decided I had H. Pylori and stuck me on a PrevPac - add a few years, random bouts here and there and some 4 PrevPacs later... At 22 I started experiencing neuralgia in my limbs - numbness and tingling - it was awful! I went from being an active fencer (swords) and 20-something year old to frustrated, losing feeling, having every Rheumatological and Neurological test humanly possible run because no one could figure out what was wrong. FINALLY at 24 my thyroid popped up to 7 and they said Hashimoto's and Raynaud's. My stomach was still sensitive but it seems sensitive to acids and whatever, and it was just an ebb and flow thing - I could go months and months without issues and then, voila! Praying to the porcelin god, so Celiac never occurred to me.

I asked my doc for a referral to an Upper GI guy because I wanted to know what my stomach and esophagus looked like seeing as I've been wreaking havoc on my lining for the last 11 years. We talk and I give him my case history and he kind of smiles and says, "I'd wager to bet you a free endoscopy that you have Celiac". I almost shanked him - ok, not really, but in my head I did lol. I'm a baker! Not by trade, but I bake ALL. THE. TIME! How dare you tell me you think I have Celiac! I also come from a Southern family! Gravies my friend, gravies! This man is trying to ruin me! This is 3 days after my 27th birthday and 2 days before I leave for Ireland. I wanted to cry. So...instead of doing something about it I ignore it, go to Ireland, come back and plan a friends rushed wedding, get sick at her bachelorette party (not drinking because I was the DD - thank you stomach, I hate you too), welcome a niece, and a goddaughter, have Thanksgiving, have Christmas, welcome a new year, meet a boy...and now I feel like crap, go back to the doc, she runs my blood tests that the Upper GI guy ordered and I never had done (I know) and I'm going back to my Upper GI guy next week...

Raise your hand if you think I have Celiac.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Oh geez. I think you should be tested, how's that?

I'm from the south, too. I love(d) to bake, too.

You can adapt your cooking to Celiac, I promise. Baking is more of a challenge, but it can be done.

Get tested. Goodness, you have a doc who sounds supportive. That's worth a lifetime of biscuits right there.

harleyridnusmcbrat Newbie
harleyridnusmcbrat
Posted
  • Author

lol - right? I'm definitely blessed with a great doc! She ran my blood tests on Friday, didn't chastise me; just kind of gave me that look and smiled. I have my other doctor's appointment with my Upper GI guy next week. I didn't want to hear another diagnosis on top of the Hashimoto's, Raynaud's, and Migraines (have had those since I was 14). It's foolish I know, but I'm turning 28 and it's high time I took control of it all and just sucked it up.

Are there tests outside of the Endoscopy and the blood tests that were run that they do?

ravenwoodglass Mentor
ravenwoodglass
Posted

I'll raise both hands and wave them. You do sound like one of us. They should do vitamin and mineral panel. If your celiac tests are positive it is a good idea to have a bone scan done. Even if your tests are negative after testing is finished do give the diet a good strict try for a few months.

mushroom Proficient
mushroom
Posted

You are finally on the right path, I believe. Who knows, you might even ditch those nasty migraines :rolleyes::)

cahill Collaborator
cahill
Posted

Welcome ,** waves hands in air**

Welcome to the club that no one wants to be a member of .

Once here you will find many ears that will hear you,the support you need to do this , a great wealth of knowledge and all the ((HUGS)) You ever need :)

GFinDC Veteran
GFinDC
Posted

2 hands waving here. Maybe we can get the wave going like they do at those sports events. :) Definitely try the diet after your testing is done. Tests are not 100% reliable so the diet trial is the only way to know for sure, unless a test is positive that is. Positive tests are almost always correct.

A good trial is 3 or more months. It can take that long or more to get results and also understand how to avoid gluten. Although many people experience positive changes in a couple weeks or less.

Starting off by avoiding processed foods is very helpful. If you avoid all the processed gluten-free things and stick with mostly whole foods it is simpler to avoid gluten. Ireland sounds great though! :D

We need to talk to our recruiting section soon, they are doing way to good a job of things lately. But welcome to the the site! :)

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

Celiac.com Sponsor (A8-M):


harleyridnusmcbrat Newbie
harleyridnusmcbrat
Posted
  • Author

You guys are wonderful :) I'm not looking forward to this one stinkin' bit, but I will definitely heed your advice. Thanks!

Skylark Collaborator
Skylark
Posted

*hand raised*

Welcome to the world of almond meal, superfine rice flour, tapioca starch, and coconut flour. You CAN bake perfectly well gluten-free and try some arrowroot starch for your gravy. B)

Since you have neuro symptoms, do give the gluten-free a try even if the GI stuff is inconclusive. There are no tests for celiac-caused neurological autoimmunity. You'll have to be strict on the diet to heal your nervous system - it doesn't self-repair fast like your gastric mucosa.

beachbirdie Contributor
beachbirdie
Posted

lol - right? I'm definitely blessed with a great doc! She ran my blood tests on Friday, didn't chastise me; just kind of gave me that look and smiled. I have my other doctor's appointment with my Upper GI guy next week. I didn't want to hear another diagnosis on top of the Hashimoto's, Raynaud's, and Migraines (have had those since I was 14). It's foolish I know, but I'm turning 28 and it's high time I took control of it all and just sucked it up.

Are there tests outside of the Endoscopy and the blood tests that were run that they do?

You might be one of the fortunate ones who find that a gluten-free diet helps all those other conditions (once you've been through the testing of course!). There is a definite correlation between Hashimoto's and celiac, not to mention that Raynaud's also is often closely associated with thyroid issues. Migraine can be triggered by gluten...it was in my son.

So, it might be a very good thing to find out for sure! Rather than thinking of it as the burden of "one more diagnosis" is could be the key to feeling a lot better!

I hope so!

Korwyn Explorer
Korwyn
Posted

Hi Harley,

Don't fear, you won't have to give up baking! It will take some work but two friends who have a catering business converted their entire business to gluten-free about three years ago, and nobody noticed! Bread, rolls, desserts, everything. And they make everything from scratch. She is the one who brings all the bread recipes to our monthly GiG meeting. And when I say, 'nobody noticed', that isn't entirely true. They cater a monthly Rotary lunch meeting, and they have had a couple people come up to them and tell them (paraphrased), "You know, I always have an upset stomach after I eat except at your lunches."

And what is your avatar pic ? I know it isn't the Butterfly Nebula, but I can't place it and it's bugging me!

Chopper Apprentice
Chopper
Posted

they said Hashimoto's and Raynaud's

That's me too! Either the celiac or the Hashimoto's has given me gastroparesis which is also unpleasant, but can be managed with diet and such. I bake every week. Here's my all purpose flour:

1 cup tapioca flour/starch

3/4 cup sweet rice flour (or more potato/tapioca)

1 1/2 cup sorghum

1 cup millet

1/2 c brown rice flour (or more sorghum/millet)

1 1/4 cup potato starch

5 tsps xanthan or guar gum

Hope you get it all figured out!

Chopper

domesticactivist Collaborator
domesticactivist
Posted

Korwyn... Does your catering friend know about the new National Gluten Free Business Forum? It just started in June in Portland but is growing. i went to my first meeting the other day and there was a great speaker and lots of different companies from bakeries to manufacturers to food carts to heath coaches to doctors represented. The website is going to launch soon but there is already a fb page. They are all set up to help new chapters start across the USA. I hope she gets in touch!

Korwyn Explorer
Korwyn
Posted

DA, I don't know. I'll ask her about it! Thanks for the heads up!

Archived

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

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

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...