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 Celiac.com!
    eNewsletter
    Donate

Hello - New Here

sussarliv

Recommended Posts

sussarliv Newbie
sussarliv
Posted

Hello!

I had my endoscopy this morning and am now on a gulten free diet. The Dr wants me to go off of gulten slowly (have you ever heard of this), I did a cold-turkey off of gulten 3 1/2 weeks ago, and I felt wonderful. That was after I got my blood tests back and they showed low positives for wheat intolerance / celiacs.

Then my GI wanted me to be tested so I had to go back on gluten. He got a good look of my bloated belly today. Last time he saw me it was flat from not eating gluten.

He took some biopsies. Once we get the test results back than he will see if I need to be 100% gluten free for the rest of my life, or if my body can handle some gluten off and on. He also said that once he gets the results then he will probably put me on a probiotic.

Have any of you had to do a process like this before?

Susan

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

We have heard of a lot of interesting things. If you have Celiac you need to be 100% gluten free. You can go through withdrawal type symptoms. You do need to be aware of cross contamination. Believe it or not you can get glutened from kissing and non food items such as lipgloss and tooth paste.

Link to comment
Share on other sites
sussarliv Newbie
sussarliv
  • Author
Posted
We have heard of a lot of interesting things. If you have Celiac you need to be 100% gluten free. You can go through withdrawal type symptoms. You do need to be aware of cross contamination. Believe it or not you can get glutened from kissing and non food items such as lipgloss and tooth paste.

Okay, the withdrawal thing I understand, so I will take it slowly :( - I guess he is waiting to see if I came Celiac or just Wheat Intolerant. Is there a difference. Or maybe he just telling me that so I would have some hope of eating pizza again. I guess he fells that there is something or he wouldn't be telling me to work my way off of gluten.

All I know is I feel so much better (at least for that week) when I was off of gluten.

How do I find out about lipstick, tooth paste and other items (if they have gluten in them)?

Thanks for the information.

Susan

Link to comment
Share on other sites
mbrookes Community Regular
mbrookes
Posted

You can find out about cosmetics etc by calling the companies involved. Almost all companies will be totally cooperative.

One word of warning as you start this journey into gluten free good health. Don't listen to the whiners and complainers. There are lots of them AND THEY WILL NOT BE HELPFUL.

Living totally gluten free is not the easiest thing in the world, but it is very "do-able". If you don't cook much, expect that to change. Some foods will be safe only if you know what's in them (I make fried chicken, fried catfish, hush puppies, pizza, brownies... lots of stuff, but I KNOW what's in them)

You can eat out, but avoid fast food (Set recipes and frequently pre-prepared food) Restaurants that prepare food when it is ordered can tailor to your needs. Remind them (make a joke of it) to use clean utensils and cooking surfaces.

I know. I am the gluten-free cheerleader. But I feel so good and I know that I want to keep on feeling good. Don't let any one rain on your parade. I'll help whenever I can, but so will most people if you just ask them.

Link to comment
Share on other sites
ang1e0251 Contributor
ang1e0251
Posted

I would totally disagree with your dr. You go off gluten completely not slowly. Slowly will not help you avoid withdrawals, if you're going to have them, not everyone does. Slowly will just keep damaging your gut and any other organs it might be affecting. You also do not eat gluten occasionally if you are gluten intolerant and not at the celiac stage. You still risk all the symptoms and damaging other organs in your body that way. Your body already told you it needed to be gluten free no matter what any dr or test says, right?

Link to comment
Share on other sites
sussarliv Newbie
sussarliv
  • Author
Posted
I would totally disagree with your dr. You go off gluten completely not slowly. Slowly will not help you avoid withdrawals, if you're going to have them, not everyone does. Slowly will just keep damaging your gut and any other organs it might be affecting. You also do not eat gluten occasionally if you are gluten intolerant and not at the celiac stage. You still risk all the symptoms and damaging other organs in your body that way. Your body already told you it needed to be gluten free no matter what any dr or test says, right?

Thanks for your advise.

When I went off G when my blood tests came back I didn't have any issues. I was off of it for 1 week, lost 4 lbs, not bloat, no GI issues and even my body aches went away. I was surprise to hear to go off slowly also. I only ate G once today and not planning on eating any tomorrow.

Yes, my body does not like gluten, so even if he says that I can eat it every so often, I am not planning on it. I am very excited about feeling better really really soon.

I am sure I will be asking a lot of questions. Thanks again!

~Susan

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748
    Nicole K
    Newest Member
    Nicole K
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
×
×
  • Create New...