Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

New And Soooo Overwhelmed

Guest havetobestrong

By Guest havetobestrong
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest havetobestrong
Guest havetobestrong
Posted

Hello,

This is my first post. I was told today that I have gluton intolerance/Celiac. Sorry if I don't know exactly how to say all of this. I'm just a bit overwhelmed. I have not had a biopsy, but my bloodwork came back positive. I have a very long family history of autoimmune disorders. I've also been diagnosed with Fibromyalgia, probable Lupus, Epilepsy, and dermatitis (along with about a zillion gastrointestinal issues). When my bloodwork came back positive, my doctor decided to go ahead and put me on the Celiac diet. I look at it all, and it just seems like so much. How do you all make sure you don't eat gluton? How do you know what medicines it is in? Does soap and toothpaste matter? I'm sorry if these questions sound silly...I just don't have a clue where to start. My doctor is getting me a packet of information together, but he also told me to look on-line at these type sites. thank you for reading and helping. -Jenny

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Hi Jenny and Welcome!!! B)

The Gluten Free diet is something to get use to and it seems a bit overwhleming at first but it does get easier especially when you see / feel an improvement in your health! :D You hang in there and feel free to ask questions, this is a great place for support and encouragement!

I too may have Lupus (currently being tested and treated) and seem to have more GI probs than most people but I'm hanging in there and hoping I will feel 100% better soon. ;)

Here are some helpful links that will answer some of your questions below and help you gain more knowledge of this disease:

Open Original Shared Link

Open Original Shared Link

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Mainstream Products that are Gluten-Free

Open Original Shared Link

Research on Diseases and Disorders Associated with Celiac Disease

Take care and God Bless :rolleyes:

lovegrov Collaborator
lovegrov
Posted

Last I looked the gluten-free drug list was outdated and included at least a couple that company says have gluten, like Tums.

richard

dana-g Newbie
dana-g
Posted

I've had a lot of success putting the name of a drug together with the word gluten in quotes into google: "drug name gluten"

Guest havetobestrong
Guest havetobestrong
Posted

Thank you for your information! There is a lot to think about! -Jenny

  • 3 weeks later...
hapi2bgf Contributor
hapi2bgf
Posted

I started out by eating only home made meals. Fresh meat, plain rice or baked potato, fresh fruit. McCormicks 100 % seasonings are safe. Meaning the Basil or the Oragano are safe but check the mixed seasoning like SantaFe etc.

Make a list of all of the products in your house that do not clearly contain wheat and call the manufacturer to find out if it is safe. Go through and mark every bottle or box "gluten-free" or "Not gluten-free" based on the label or phone call. Personally, I think calling and asking is the easiest way to go. Get a list of the unexpected items to look out for and learn the trigger words like natural flavorings etc.

The diet is labor intensive at first, but soon you will have clearly marked gluten-free items throughout your house and then you will not feel so overwhelmed.

CSA/USA and Clan Thompson also sell product lists that you may find helpful.

Good luck.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Coeliac or not coeliac

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful...
    2. knitty kitty
      - knitty kitty replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Coeliac or not coeliac

      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!! This is why your endoscopy didn't show much damage to the intestinal lining!! The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs...
    3. knitty kitty
      - knitty kitty replied to kevert93's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Having issues with chips

      Hi, @kevert93, Those Gluten Assist enzymes digest carbohydrates, not just gluten specifically. Eating a high carbohydrate meal can deplete Thiamine Vitamin B 1 causing digestive symptoms like you describe. You could also be having difficulty digesting the oils used in those chips. Thiamine in the form Benfotiamine can help. We need the eight...
    4. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Coeliac or not coeliac

      Thank you for responding. I didn't intentionally reduce gluten prior to the endoscopy though I dont generally eat a lot of it due to the unpleasant symptoms. I was under the impression my TTG of 87.4 was very high, at least that's what my doctor said.
    5. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Coeliac or not coeliac

      Thank you. I think what's confused me is that I assumed the biopsies would show damage due to my TTG being so high. I have been looking into paying for the genetic testing. I think I will do this. If it shows I have the genes I will consider the repeat endoscopy. If I haven't got the genetic susceptibility at least I will know and not go through...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,184
    • Most Online (within 30 mins)
      10,442
    Dennis E. Schertz
    Newest Member
    Dennis E. Schertz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
    • knitty kitty
      Coeliac or not coeliac

      By knitty kitty · Posted

      @CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!!  This is why your endoscopy didn't show much damage to the intestinal lining!!  The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs.   Proton pump inhibitors cause intestinal damage in the long run.  If you get off the Lansoprazole for a few months so your immune system is not blocked, then do a gluten challenge, and an endoscopy, THEN they would see intestinal damage. Sheesh!  Doctors can be so ignorant.  I've seen this so many times it's frustrating! Take the B Complex and Benfotiamine.  Get off the Lansoprazole.  Go with the DNA test results.   Welcome to the tribe! P.S. B vitamins are needed to correct anemia!  Not just iron.  
    • knitty kitty
      Having issues with chips

      By knitty kitty · Posted

      Hi, @kevert93, Those Gluten Assist enzymes digest carbohydrates, not just gluten specifically.  Eating a high carbohydrate meal can deplete Thiamine Vitamin B 1 causing digestive symptoms like you describe.  You could also be having difficulty digesting the oils used in those chips.  Thiamine in the form Benfotiamine can help. We need the eight B vitamins to digest our food, carbs, fats and proteins.  Poor digestion can cause symptoms like vomiting and stomach pain, brain fog, headaches, exhaustion.  Try taking a B Complex with the activated forms of the B vitamins (Life Extension's Bioactive B Complex is great!) and additional Benfotiamine.  The B vitamins are used to make digestive enzymes and will allow your digestive system to function properly.  The B vitamins also will improve headaches, exhaustion, and brain function.  Taking Thiamine in the form Benfotiamine will improve digestive symptoms and lower inflammation, too.  Benfotiamine and the B vitamins are safe.  The B vitamins are chemical compounds found in whole foods, not in highly processed foods like chips.   The body cannot make the B vitamins, so supplementing is beneficial.  Benfotiamine is safe and nontoxic even in high doses.
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Thank you for responding.  I didn't intentionally reduce gluten prior to the endoscopy though I dont generally eat a lot of it due to the unpleasant symptoms. I was under the impression my TTG of 87.4 was very high, at least that's what my doctor said.  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Thank you.  I think what's confused me is that I assumed the biopsies would show damage due to my TTG being so high.   I have been looking into paying for the genetic testing.  I think I will do this.  If it shows I have the genes I will consider the repeat endoscopy.  If I haven't got the genetic susceptibility at least I will know and not go through another endoscopy unnecessarily.     I have been on 30mg lansoprazole daily for 3 years and my acid symptoms have not resolved.  Its miserable being in pain and not having a definite answer.  I have had transfusions for iron due to chronic low ferritin that doesn't resolve with tablets but I'm not sure about B vitamins.  
×
×
  • Create New...