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

Newbie To Cd And This Site :)


Suezboss

Recommended Posts

Suezboss Apprentice

Hi everyone.

I just had an upper endoscopy on Thursday. My Dr. was doing one to rule out everytying, because my former Dr. (who DIDN'T do ANY tests over the past year, and just kept giving me different meds, for IBS, GERD, Anti-Spazmals etc.. so I left her, and went to a new Dr. who scheduled the tests)... well, right when they woke me from the anastesia (sp?) he said, "well, we found someting that I wasn't expecting to find... your upper intestines are swollen, and it looks like Celiac Disease... Call me in a week for the results of the bi-opsy, and if we need to do blood tests, we'll go from there"

OK- now i'm freaking out, and I have been hysterical for days about it. I have been trying to cut back on Gluten, but from the research i've ben doing over the past few days, it seems that if he DOES have to do more tests (bloodwork) then I HAVE to have Gluten in my system for the results to be accurate.. is that correct? (I have been having stomach pains, and I just want them to go away at this point!)

Also, I am not handeling it very well... I am getting married in 18! days!!! and I feel so bad for my future husband, b/c of cousre this will effect him as well...

I guess I just need some support from people who know what i'm going trough and any advise/suggestions/support you can offer me on my NEW lifestyle change... I am hoping to have Concerete results by this week

Thanks for listning to me vent!

-Sue


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

You can get a blood test asap so that you can begin eating gluten free asap. Go today and insist that since they've suggested to you that this IS celiac, you need the blood drawn NOW, so that you may initiate a gluten free diet!!

KaitiUSA Enthusiast

If you just had a endoscopy come back positive for celiac then there is no need for blood tests. Getting an endoscopy is still the gold standard for diagnosis even though there are some blood tests that are very accurate.

Anyways, it may be overwhelming at first but it gets easier and I am sure it will not be a huge problem in the relationship if you 2 love each other.

It will all be ok :D It's good that they caught this now.

And yes you have to be on gluten during all testing to have accurate results

Suezboss Apprentice
If you just had a endoscopy come back positive for celiac then there is no need for blood tests. Getting an endoscopy is still the gold standard for diagnosis even though there are some blood tests that are very accurate.

Anyways, it may be overwhelming at first but it gets easier and I am sure it will not be a huge problem in the relationship if you 2 love each other.

It will all be ok :D It's good that they caught this now.

And yes you have to be on gluten during all testing to have accurate results

<{POST_SNAPBACK}>

Thanks.

I just think with everyting that is going on, i'm a bit overwhelmed at the moment. and the waiting until thursday is killing me.

Can I eat my wedding cake? What kind of flour is cake made out of?

I know i'm being stupid, but I don't know much about all this yet... :(

KaitiUSA Enthusiast

no you can't have the wedding cake. It's wheat flour. Most flour used in these mainstream products are wheat. You can find out alot of what you can and can't have on this site and ask your fiance to help and support you. I'm sure it will be ok.

https://www.celiac.com/st_main.html?p_catid=12

Here is a list of safe and forbidden ingredients. Gluten can be hidden under natural flavors, modified food starch, and ingredients like that.

There are some companies that are safe unless they say wheat,rye,barley,oats right on the label..they will not hide anything..that list of companies is on this site but if you can't find it let me know and I can email it to you or post it.

let me know if you need any help

Also, for your wedding cake, there are some places that will make a gluten free cake for you.

julie5914 Contributor

If you have celiac, no, you can't eat regular wedding cake. :( But, since you stil have 18 days, I doubt they have made your cake yet. Call them and ask them about it - you can replace the flour with gluten free flour. Pamela's makes all kinds of baking flours for cakes and things. I'm sure if you provide the flour and tell them where to substitute it won't be a problem or extra cost. Bake a little one at home to test how well it stays together, etc. Good idea if you or your fiance can taste the difference is to do bottom layer gluten-free (that is the layer you cut) middle layer gluten, and top layer gluten-free (since you save it). Or, you can do top layer gluten-free, all other layers gluten free, so the cutting of the cake for show, but have 2 slices gluten-free ready to feed each other (they both will have to be gluten-free because of contamination and avoiding confusion).

It is hard, and there is a little bit of greiving to deal with when your diet changes for life. You will have to be gluten-free on your honeymoon as well. Get some of those celiac restaurant cards and start getting used to having to ask waiters and people what is in the food. Read all over this site and everywhere on the internet. The more you know, the easier it is to follow. You will start feeling SO much better. It is a small price to pay to be gluten free for your wedding and honeymoon than to eat gluten and feel icky!

celiachap Apprentice
Good idea if you or your fiance can taste the difference is to do bottom layer gluten-free (that is the layer you cut) middle layer gluten, and top layer gluten-free (since you save it). Or, you can do top layer gluten-free, all other layers gluten free, so the cutting of the cake for show, but have 2 slices gluten-free ready to feed each other (they both will have to be gluten-free because of contamination and avoiding confusion).

It

<{POST_SNAPBACK}>

Maybe I'm not getting this right, but this seems to be a suggestion to make a cake with BOTH gluten and non-gluten ingrediants in different layers. I don't think that having ANY glutened cake underneath, or on top of, gluten-free cake is such a good idea. Again, maybe I misunderstood.


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



Celiac.com Sponsor (A8-M):



julie5914 Contributor

Well, with my wedding cake there were little stands separating the teirs, so the cakes didn't touch, and you could tell by size which layer was which.

I meant to say to the top gluten-free and the rest with gluten with gluten-free pieces set aside that you can feed each other, btw. I accidentally said make the top gluten-free and then the rest gluten-free. Ideally you would have the whole thing gluten-free, but it depends on how the baker feels about that. Sometimes gluten-free stuff can be a little bit crumbly, and the last thing you want is your wedding cake collapsing. The above poster is right though, if you do one or two layers gluten-free and rest with gluten, you would have to be careful about contamination and make sure the baker knows to make the gluten-free stuff first.

Suezboss Apprentice
You will have to be gluten-free on your honeymoon as well. Get some of those celiac restaurant cards and start getting used to having to ask waiters and people what is in the food.

<{POST_SNAPBACK}>

Thanks.

What are Celiac restaurant cards?

celiac3270 Collaborator

A restaurant card is a card or piece of paper that you give to a waiter (for the chef) to explain your dietary restrictions and how your food must be repaired...

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. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,318
    • Most Online (within 30 mins)
      7,748

    acurn18
    Newest Member
    acurn18
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • 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.