• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Your Bowels Are Like Berlin Post War
0

7 posts in this topic

That's what my Gastro doctor told me today when I complained that three months and a half gluten-free, I still have- often -  bad or very bad days. "Three months is nothing. You haven't even started rebuilding yet, you're just moving out the ruins" he said.

 

He also said I might have other problems apart from celiac, of course, but we cannot start understanting if I do nor sorting them out until my gut is better (including testing for other allergies). And that the key word is Patience. And that I certainly have to eat simple things, avoid processed foods and anything which patently does not agree with me, and that I have to eat in a good way if possible - not wolfing my food down nor eating in front of my computer if possible and most certainly not having dinner just before going to bed because that's super work for my feeble gut just when he would like to go to sleep as well (it's definitely a "he" for me), so that obviously I'm getting up tired in the morning. And that possibly some of my problems might not go away, and then we'll have to investigate why, but we cannot do that before my villis are back to normal.

 

And that in his experience, for an adult, it might take anything from six months to 3 years, but more often between 12 to 18 months. Besides, he said, we don't know how long you've been celiac - how long the condition has worked, that is - before I started having symptoms: it might be some months, it might be several years. Basically, having destroyed villis (I'm classified as a 3-B) does not enable us to understand in how bad a shape my gut actually is.

 

As you all always say to newbies: hang in there, it will get better. I'm hanging, guys... I just wanted to share all this with you. I particularly liked the metaphore:-). He also said something about having to rebuild the Berlin Wall (to stop the leaky gut) and I didn't make him notice that he was mixing up his historical periods... It's hard to be patient, but in a way, it's nice to know that it just takes time.

 

(he also said that yes, it is possible that someone might be sensitive to gluten under 20 parts per million, in rare cases, but that if I'm having allergic reactions it is more probably to something else but that's hard to sort out until my gut feels better. So I'll keep my food diary and eliminate everything which looks suspect. It' going to be a long road, babies...)

 

a.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Thanks!  That is exactly what I needed to hear today.  

0

Share this post


Link to post
Share on other sites

Smart Doctor. I am a fan of the mixed metaphor. I especially like to get hold of wrong end of the stick and proceed to beat about the bush with it. Luckily you doc doesn't.

Good luck with healing (not sure if I can squeeze a reunification reference in here)

Mw

0

Share this post


Link to post
Share on other sites

I appreciate this post. I've only been gluten free completely for just over a month, and I feel the same with only a little added energy. On particularly bad days I wonder if I have been glutened or if I am doing wrong. I have another doctors appointment next week and was going to bring that up, but this helped me realize this might take time. I guess I am just a little impatient.

0

Share this post


Link to post
Share on other sites

Excellent post! Thank you for passing on your doctor's advice. He sounds like a knowledgeable doctor. Waiting to confirm the unknowns until after healing is wise and I'm going to heed his advice. It seems very sound.

Cali

*corrected misspelling ;)

0

Share this post


Link to post
Share on other sites
Ads by Google:


What I'm trying to do is:

I keep a food diary

I don't drink alcohol at all (if I'm out with friends I might try a quarter of a glass but no more than that)

I have almost entirely eliminated coffee and tea, but also Coca Cola and drink orange juice for breakfast

I'm trying to have very little processed food, I bake my own bread and muffins

Non gluten pasta in limited quantities, quinoa rice etc

Lots of fresh fruit and vegetables, simple protein food (chicken, beef, fish; parmesan cheese on pasta because I'm lactose intolerant - for now? - but parmesan when seasoned has no lactose)

No dairy (I'm intolerant)

 

In restaurants I explain everything and typycally eat grilled meat and roasted potatoes, maybe some of my own bread

Travelling is the worse because I do bring stuff with me but it must be processed food (crackers and the like) and I have to rely on apples and bananas....

 

alessandra

0

Share this post


Link to post
Share on other sites

Thanks for the info alesusy.

I have been on a gluten free diet for 21 months and thought I had 'cracked it' but for the last 9 months my old symptons have returned. My life once again revolves around the nearest loo! This forum is a blessing as I have learned more about my condition from fellow sufferers than any visit to my local doctor here in the UK.

David

0

Share this post


Link to post
Share on other sites




Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,339
    • Total Posts
      935,566
  • Member Statistics

    • Total Members
      64,999
    • Most Online
      3,093

    Newest Member
    Con Smith
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
  • Upcoming Events