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

My Test Came Back

w8in4dave

Recommended Posts

w8in4dave Community Regular
w8in4dave
Posted

My test came back negative , I was shocked to find this out!! I really cannot believe it! So I have decided to just go Gluten Free!! I know I have gone Gluten free for 3 days and OMG the difference was amazing!! I know it seems odd that 3 days would make me feel so wonderful but it did!! So I decided that if my test came back negative I'd go gluten free, I don't need the Dr. To tell me to go gluten-free , I need me to take care of myself! Thats all!! Just take care of myself!! It just makes sense to me!! I used to do the Atkins diet, was told it wasn't good for me!! I quit a few years ago , and lo and behold I started having problems. Now mind you I don't have some of the problems alot of you have but I have problems! And the more I thought about it! The more it dawned on me! I was eating meat and fresh fruits and veggies and Atkins! Bingo!! SO back I go eating the way I did before!! I'd like to thank this forum for helping me!! I know I am new and have to have every thing I say approved my a mod. But just reading everything you all have to say is a great help!! It sure made me think!! And now I have an answer!! TY so very much!! 

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

Celiac.com Sponsor (A8-M):


Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Best of luck with your diet improvements and keep us informed about your health progress.

nvsmom Community Regular
nvsmom
Posted

I hope the symptoms of your NCGI continue to improve as time goes by.  :)  You have a great attitude about starting the gluten-free diet - I'm sure that will help you immensely.  Check the boards for recipes and more tips on recovery if you need them.

 

Good luck!  :)

gatita Enthusiast
gatita
Posted

Yep, welcome to the club! You have a great attitude, and I hope you stay involved with these boards, they are SO helpful.

GFinDC Veteran
GFinDC
Posted

Congrats!  Figuring out the issue yourself is just as valid as a doctor doing it IMHO.  Most celiacs are undiagnosed or mis-diagnosed with a different condition.  The medical establishment doesn't have a great track record with diagnosiing celiac disease.  Kind of a lousy one in fact.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Thank you so very much!! I am glad you all "Think" I have a good attitude , this is like day 2 of my changing habits!! We will see how my attitude is in a couple of weeks  :wacko: LOL! Really was hard today !! I went to a friends house and they keep offering me food!! Want some toast? Want some muffins? Want some chips? No no and no thanks! I just told them any carbs I eat have to be from Natural sources ... Like potatoes and rice, They are elderly and I was not going to go into Celiac with them. SO I stayed there quite a while and didn't eat 1 piece of Gluten!! :) not one drop!! I didn't even have a cup of tea!! 

 

Now to get a pic up :) 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

By the way I am the one on the right of my profile pic. That is the pic my daughter and I took on Mothers day :) She is also going to be tested for Celiac.

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

Celiac.com Sponsor (A8-M):


surviormom Rookie
surviormom
Posted

I think you are making a smart move.  My test today said no celiac sprue identified, that I am a NCGI ( actually I think the word used was Sensitivity but I think they are the same)  Explained to me that, if I continued to eat Gluten products I could end up being Celiac.  I have not been eating Gluten products for the past year, only occasional incidents.  Well.  I do not need a diagnosis.  I just will never the touch the stuff again, not intentionally anyhow.  Same plan for my kids,

 

So, good for you.

nvsmom Community Regular
nvsmom
Posted

Thank you so very much!! I am glad you all "Think" I have a good attitude , this is like day 2 of my changing habits!! We will see how my attitude is in a couple of weeks  :wacko: LOL! Really was hard today !! I went to a friends house and they keep offering me food!! Want some toast? Want some muffins? Want some chips? No no and no thanks! I just told them any carbs I eat have to be from Natural sources ... Like potatoes and rice, They are elderly and I was not going to go into Celiac with them. SO I stayed there quite a while and didn't eat 1 piece of Gluten!! :) not one drop!! I didn't even have a cup of tea!! 

 

Now to get a pic up :)

Good for you!  :) I usually try to bring some munchies when I visit, and let people fuss over my drinks (some of us just like to fuss) and then a visit goes smoothly.

 

Don't be surprised if you start feeling a bit worse for a week or so, many of us go through a withdrawal that makes us tired, grumpy and headachey.  Hopefully it won't hit you but if it does, know that it doesn't last.

 

p.s. You and your daughter look so much alike. Pretty girl.  I'm glad she is getting checked too.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

TY everyone!! My daughters test came back negative also!! Thats ok she has the same attitude as I do !! She will be fine! Thank you for the nice complements!! Sorry I didn't get back here sooner! I am still figuring this place out :) ... (Lost the thread) hahaha anyway!! I have felt great!! I cannot believe the energy I have had! Taking walks lost weight! My goodness!! I was in a 14 now an 8! The bloating is gone!! I cannot believe it! If I'd of known way back then!! OMG! I didn't know it would just disappear !! 

This board is just wonderful!! I appreciate everyones post!! Thank you so very much!! Now I seen a gluten free pizza posted on FB I have got to go check it out!! :) Have a great weekend everyone!! 

kareng Grand Master
kareng
Posted

! Taking walks lost weight! My goodness!! I was in a 14 now an 8! The bloating is gone!!

 

 

In 7 days?  That's a lot of bloating!

w8in4dave Community Regular
w8in4dave
Posted
  • Author

In 7 days?  That's a lot of bloating!

Absolutely !! It is!! it was all in my gut!! I knew something was wrong!! My pants would sag on my bottom but be tight on my gut!! I took myself off and 1 week!! Wow!! Now I don't know what I ate yesterday! But something had me a lil bloated!! I was even a lil bloated today from what ever it was!! I think I made hubbs some noodles and out of habit I tasted them to see if they were done. That is the ONLY thing I can think of!! Some times old habits are hard to break!! When I realized I did that I was like OMG what did I do? Then realized how many times I did it .... I have to break those tasting to see if something is done habit!! And stirring with the same spoon habit!! 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

And amazingly enuf!! My gut does not hurt as much!! OMG I was walking around in pain all the time!!! I told the Dr. my gut hurts all the time!! He basically blew me off... Now right now it hurts a bit. but nothing like it did! I mean really it is nothing to complain about now!

Ciel121 Apprentice
Ciel121
Posted

  It's exciting, isn't it? I remember that first week on my elimination diet...ah. I told the doctor it felt like my stomach and abdomen had simply disappeared. I swear I had to look down to see if I still had an abdomen because I felt like a floating head. :-) Great feeling. Congrats to you! Stay with it.

  I was lucky and my test came back positive, but my dad refused to go to the doctor to get tested and just went gluten-free. I kind of wish I had more testing done. All they did was a blood test. :-( I know there is genetic testing and the endoscopy, which I never actually had. I'm so excited to go to the Celiac Center at Columbia University at the end of the month. I have learned that it is very important to find a doctor who is an expert on Gluten Intolerance and Celiac disease. Were you lucky enough to find a doctor like that?

   I also recommend reading Gluten-Free Girl by Shauna James Ahern. She has a great attitude and some suggestions on how to cope. Love that book.

taynichaf Contributor
taynichaf
Posted

My test came back negative , I was shocked to find this out!! I really cannot believe it! So I have decided to just go Gluten Free!! I know I have gone Gluten free for 3 days and OMG the difference was amazing!! I know it seems odd that 3 days would make me feel so wonderful but it did!! So I decided that if my test came back negative I'd go gluten free, I don't need the Dr. To tell me to go gluten-free , I need me to take care of myself! Thats all!! Just take care of myself!! It just makes sense to me!! I used to do the Atkins diet, was told it wasn't good for me!! I quit a few years ago , and lo and behold I started having problems. Now mind you I don't have some of the problems alot of you have but I have problems! And the more I thought about it! The more it dawned on me! I was eating meat and fresh fruits and veggies and Atkins! Bingo!! SO back I go eating the way I did before!! I'd like to thank this forum for helping me!! I know I am new and have to have every thing I say approved my a mod. But just reading everything you all have to say is a great help!! It sure made me think!! And now I have an answer!! TY so very much!! 

My tests were all negative too! And I could see a huge difference in myself within days as well :) Good luck on the diet!! :)

surviormom Rookie
surviormom
Posted

Absolutely !! It is!! it was all in my gut!! I knew something was wrong!! My pants would sag on my bottom but be tight on my gut!! I took myself off and 1 week!! Wow!! Now I don't know what I ate yesterday! But something had me a lil bloated!! I was even a lil bloated today from what ever it was!! I think I made hubbs some noodles and out of habit I tasted them to see if they were done. That is the ONLY thing I can think of!! Some times old habits are hard to break!! When I realized I did that I was like OMG what did I do? Then realized how many times I did it .... I have to break those tasting to see if something is done habit!! And stirring with the same spoon habit!! 

I kept doing that in the beginning, that is just one reason everyone is now eating this way, that and at least 2 of our kids have little things that add up to gluten and go away without it.  The other 3 have had improvements without it.

w8in4dave Community Regular
w8in4dave
Posted
  • Author

TY! I am doing pretty good! Of course I was on Atkins for years!! I should of just stayed on it! I like to eat meat with fresh veggis and stuff!! It is hubbs that like the noodles every night!! I will have to find a gluten free good noodle so he can eat it and not really know the difference! 

GwenO Apprentice
GwenO
Posted

My daughter is a celiac, I tested negative - twice.  I quit gluten anyway - mostly to support her at first, but I feel so much better.  Last week I had a plate of gluten pasta that someone offered me - looked good, I was hungry - poor choice because it made me quite ill for a few days.  So I'm just going with it!

w8in4dave Community Regular
w8in4dave
Posted
  • Author

Yea thats why I wish I would of been tested positive! So I wouldn't think in my head " I am not Celiac, I can eat some" And go for it!! The good thing Is I have never been a big bread Fan or a big Noodle fan! So I will not be tempted by that! Now come  the holidays! I have noooo idea what I am going to do!! We go to hubbs brothers house!! I always blamed it on his water , because I run to the bathroom every time we eat over there!! Now I know it isn't the water! I will have to take my Gluten free dishes over there and just eat those! No more of his BIL's cheesie potatoes with Cream of soups!! And stuff! Wow! I think back on these last few weeks and think , I cannot believe I was eating all that Gluten! I am sure I may be getting some ( I don't know where from) but I am sure I am getting some but I sure feel better!!

 

It is nice you quit Gluten to support your daughter!! I'd of done the same thing! And then having it in your face and eating some then feeling bad!! So very sorry!! Hope you feel better soon!! 

kareng Grand Master
kareng
Posted

Yea thats why I wish I would of been tested positive! So I wouldn't think in my head " I am not Celiac, I can eat some" And go for it!! The good thing Is I have never been a big bread Fan or a big Noodle fan! So I will not be tempted by that! Now come  the holidays! I have noooo idea what I am going to do!! We go to hubbs brothers house!! I always blamed it on his water , because I run to the bathroom every time we eat over there!! Now I know it isn't the water! I will have to take my Gluten free dishes over there and just eat those! No more of his BIL's cheesie potatoes with Cream of soups!! And stuff! Wow! I think back on these last few weeks and think , I cannot believe I was eating all that Gluten! I am sure I may be getting some ( I don't know where from) but I am sure I am getting some but I sure feel better!!

 

It is nice you quit Gluten to support your daughter!! I'd of done the same thing! And then having it in your face and eating some then feeling bad!! So very sorry!! Hope you feel better soon!! 

 

You make the potatoes this year.  (you and I seem to be on a  soup thing today!)  ;)

 

Open Original Shared Link

Brandiwine Contributor
Brandiwine
Posted

There's still a few things I'm trying to work out in my head, are gluten sensitivities also hereditary? Or is there a flaw in the test? A couple of my family members want to get tested ( we all suffer from different autoimmune diseases) do you have to get all the tests done because one will show and another may not? Has anyone tested negative and then later tested positive?

kareng Grand Master
kareng
Posted

There's still a few things I'm trying to work out in my head, are gluten sensitivities also hereditary? Or is there a flaw in the test? A couple of my family members want to get tested ( we all suffer from different autoimmune diseases) do you have to get all the tests done because one will show and another may not? Has anyone tested negative and then later tested positive?

 

 

Since there are no reliable tests for gluten intolerance other than eliminating it and seeing what happens, I am answering about Celiac disease.

 

 It is hereditary but not everyone with the genes for it develops it. You could test negative today but become positive at a later date.

 

 

Editted because it didn't really make sense.  :blink: Got to stop letting the cat help with answers.

Brandiwine Contributor
Brandiwine
Posted

Editted because it didn't really make sense. Got to stop letting the cat help with answers.

Cute :) I have to edit mine a lot too, I keep telling myself to proof read but....

Thanks, I guess it's just hard figure out why some people have the same symptoms and GFD helps but their tests were negative.

Only reason I'm so inquisitive is because I'm trying to explain all of this to my fam and I don't even totally understand it. I knew the gene sometime isn't "activated" (for lack of a better word) until later or maybe from stress or trama. I did know enough to tell them to ask for a full Celiac panel when they go for the blood test. (Hope that was right) *crosses fingers*

w8in4dave Community Regular
w8in4dave
Posted
  • Author

I had a pretty long talk with a friend of mine today, she told me she thought I was doing great on my diet because I get it in my head I cannot eat some stuff so I just don't eat it! I said because 1st of all I hate spending most of my time thru out the day running to the rest room, and second of all , I went on this diet for 3 days and felt so much better!! And actually I have never really been much of a bread eater, and the noodles I could live w/o .. everything eles I can eat!! Just make sure it is Gluten free!! So we were at the store and I was looking for Basmitti rice, She said "ohh ohh look here it is and it is gluten free" It was a special kind. Because the other Basmatti rice was not gluten free , So she is behind me on my diet! I also told her , this is NOT a diet! It is a way of life!! I will try <-- key word ..to never eat a glutenized noodle or piece of bread or dish of anything again!! If I do it will be a total accident!! 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

OK talked to the Dr's office , after they sent me a letter wanting me to call them, My test for Celiac came back positive. I said but you called and said it was negative!! She said I have your test right in front of me and it is positive. So I have a Dr. apt. with some other Dr. In Aug! SO back on Gluten I go! 

My friend said well you wanted to be sick from something. I said No I wanted answers!! And this "If I am going to be sick from anything" I'd much rather be Celiac than any thing eles!! I can control Celiac!! So end result " Test for Celiac" POSITIVE .... Thank you!! Now I know!! 

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
      131,878
    • 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.