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

What Do You Think?

MamaMeagan

Recommended Posts

MamaMeagan Apprentice
MamaMeagan
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

Your blood tests were positive. The cure for either Celiac or Gluten intolerance is a life long gluten free diet. And sorry to say, your doctor is wrong. You have to be 100% gluten free, with either diagnosis. Once in a while cheating is not an option- at least not if you want to heal.

MamaMeagan Apprentice
MamaMeagan
Posted
  • Author

Hmm they wrote on my lab work the blood test, questionable for celiac not for diagnosis??

katifer Apprentice
katifer
Posted

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

I am just going to add that the reason i went to be tested was because my child was having chronic lose stool and was struggling to gain weight/and grow. Both of our tests came back negative.(unfortunately i was put on an elimination diet while breastfeeding and gluten had been out of my system for a while) He was diagnosed failure to thrive(born a 9lb)...under the 2nd %...took gluten out of his diet and has been great since...he and i both have the gene and his endoscopy was fine but he had already been off gluten for too long they shouldn't have even done it. I will be honest it was a VERY hard decision to make without every test coming back positive but the doctors at Emory in Atlanta just said if he cannot tolerate it then it is not good for him. He is 3 now and my 5 year old and i all are gluten free. They are both doing so well--they are not catching ever sickness anymore(they rarely ever get sick), they do not know the difference when it comes to gluten free food and they know what they are allowed to have. We eat well and they are so much more healthy than before. My 3 year old is growing and doing well. The doctors believe that i have celiac because of all my symptoms,gene test and i am very,very small compared to the rest of my family...i stopped growing in 6th grade. Celiac and food intolerances..anything that makes your food rush through your body means you are not getting the proper nutrition and your body suffers. i hope you can find a support group to help if you decide to go fully gluten free-it has saved our family from sooo much pain. God Bless

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.