Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Appointment On Thursday

missj

Recommended Posts

missj Rookie
missj
Posted

I have my appointment on Thursday morning, so I am hoping I get a bright, fresh and REASONABLE doc. But just in case I don't get what I am hoping for, I want to make sure I have all my ducks in a row. Right now my plan is:

Ask for genetic testing first, so I A) don't have to do a gluten challenge right away and B)it gives me some information that may help my mom, who despite having her colon removed (because of supposed UC) is still having lots of problems. We looked through her med records and from what we could find none of her docs ever looked at Celiac as an option, even though many of her symptoms matched it.

I have decided that no matter what, I do want the scopes, just so I can rule out anything serious. I don't really believe in invasive testing if it can be avoided but I think that in this case it will put my mind at ease regarding UC, Crohns and other things. I will be doing a GC before this happens and I will do both the colonoscopy and endoscopy.

My question to you all fine people is, do you have any advice if she starts telling me that there is no way I could have it? Do you think it would be a good idea to print off some research articles to take with me or should I just be pushy? I don't want to look like a hypochodriac or one of those people who go to the doc for attention. I asked her the last time "why do you say that?" And her response was "just from the tests", which I only had a Ttg, IgG and IgA done all while gluten lite. She acted like it didn't mean anything that I was GL at the time or that she didn't believe me.

I know I can't let the nerves get to me and that I just need to do whats right for me, no matter how pushy I need to be but I sure could use a confidence boost before I head in there!

Thanks guys for being so great and supportive. Other than a few homeopathic friends I have, you guys are the only ones who get it.

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

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted

I have my appointment on Thursday morning, so I am hoping I get a bright, fresh and REASONABLE doc. But just in case I don't get what I am hoping for, I want to make sure I have all my ducks in a row. Right now my plan is:

Ask for genetic testing first, so I A) don't have to do a gluten challenge right away and B)it gives me some information that may help my mom, who despite having her colon removed (because of supposed UC) is still having lots of problems. We looked through her med records and from what we could find none of her docs ever looked at Celiac as an option, even though many of her symptoms matched it.

I have decided that no matter what, I do want the scopes, just so I can rule out anything serious. I don't really believe in invasive testing if it can be avoided but I think that in this case it will put my mind at ease regarding UC, Crohns and other things. I will be doing a GC before this happens and I will do both the colonoscopy and endoscopy.

My question to you all fine people is, do you have any advice if she starts telling me that there is no way I could have it? Do you think it would be a good idea to print off some research articles to take with me or should I just be pushy? I don't want to look like a hypochodriac or one of those people who go to the doc for attention. I asked her the last time "why do you say that?" And her response was "just from the tests", which I only had a Ttg, IgG and IgA done all while gluten lite. She acted like it didn't mean anything that I was GL at the time or that she didn't believe me.

I know I can't let the nerves get to me and that I just need to do whats right for me, no matter how pushy I need to be but I sure could use a confidence boost before I head in there!

Thanks guys for being so great and supportive. Other than a few homeopathic friends I have, you guys are the only ones who get it.

I think its a great idea for you to take some solid research from a well respected medical research team or journal, specifically if it relates to you and your symptoms. I made a list (sort of a timeline) of all my symptoms over the years, and took that with me. That way I didn't forget things that were important, and it kept me on track. The first idiot I saw, didn't care... my efforts were pointless, so he lost the gig.

I found a better doctor who DID listen and was interested in all that I had to say. He also asked me many questions, explained a few things (that I already knew from my endless research...but nice to know he was willing to tell me). If you go to Mayo Clinic's site and type in celiac, you will find a list of things you should ask your doctor, and things your doctor should ask you. That would be very helpful as well, at least for you to look over before you go. ;) Good luck! I hope you end up with a fantastic doctor, who knows what this is all about.

Archived

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

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


  • Member Statistics

    • Total Members
      128,175
    • Most Online (within 30 mins)
      7,748
    Janice Emmendorfer
    Newest Member
    Janice Emmendorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free also, heres what has help me in just the past few years, once I realized I was at a healing plateau and reallize the deficiencies.  Most recently, I started a statin which I only took for two weeks befpre it started to cripple me.  Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gethen fs a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer. likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...