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

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
      131,602
    • Most Online (within 30 mins)
      7,748
    Victor bowden
    Newest Member
    Victor bowden
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.