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

New To Celiac

RaeRae

By RaeRae
in Coping with Celiac Disease

Recommended Posts

RaeRae Newbie
RaeRae
Posted

I have just been diagnoised with Celia disease( through blood work) after living with the misdiagnois of IBS for the past 15 years. So I am waiting to get into a Gastrointrologist for my scope,but my Dr states that I should continue eating Gluten as my regular diet until I have the final test done, which is easy for him to advise as he is not the one that is getting sick..any suggestions?

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

Celiac.com Sponsor (A8-M):


heatherjane Contributor
heatherjane
Posted

Unfortunately, he is correct. You do have to continue eating gluten for your tests to be accurate, otherwise your body begins the healing process and makes celiac more difficult to spot. I'm guessing you don't have a scope scheduled yet? Was your doctor able to refer you to someone? I got in with my first GI appointment pretty quickly because my PCP office called them and set it up.

RaeRae Newbie
RaeRae
Posted
  • Author

Unfortunately, he is correct. You do have to continue eating gluten for your tests to be accurate, otherwise your body begins the healing process and makes celiac more difficult to spot. I'm guessing you don't have a scope scheduled yet? Was your doctor able to refer you to someone? I got in with my first GI appointment pretty quickly because my PCP office called them and set it up.

I just found out on December 23, so im guessing with the holidays in between there will be some time before I hear anything...I am trying to still eat as before but i am incorporating some gluten free products into my diet as well. Do you know if one is awake for the procedure of the scope in Canada, I have read in the USA they put you to sleep?

Roda Rising Star
Roda
Posted

They usually put you under heavy sedation through your IV. I've had two EGDs(upper scope) and a colonoscopy and my son had an EGD and they used propofol IV. We didn't remember a thing.

heatherjane Contributor
heatherjane
Posted

I went under for mine as well. (I'm in the US)

MitziG Enthusiast
MitziG
Posted

You will most likely be under. If they haven't scheduled you yet, it is time to start making yourself a pain in the rear. Call them, every day. Insist that you need in soon because eating gluten is making you ill. I remember the two weeks waiting for my biopsy took forever, I couldnt WAIT to stop eating gluten! Hope you get yours done soon!

beebs Enthusiast
beebs
Posted

Yeah- but keep eating it! Because if you don't you'll end up with a false negative. And trust me - you don't want that!

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

Celiac.com Sponsor (A8-M):


hspichke Apprentice
hspichke
Posted

I have just been diagnoised with Celia disease( through blood work) after living with the misdiagnois of IBS for the past 15 years. So I am waiting to get into a Gastrointrologist for my scope,but my Dr states that I should continue eating Gluten as my regular diet until I have the final test done, which is easy for him to advise as he is not the one that is getting sick..any suggestions?

I am in the same boat. Mine is scheduled for Jan 13th, but my Dr said I could go gluten free a wk before.

englishrose Newbie
englishrose
Posted

Wow, you get seen quickly in the US! I had to wait two months from blood test diagnosis to biopsy, and it would have been four if I hadn't made a fuss. And this was after I waited six weeks for my blood test results because they lost them the first time :rolleyes:

RaeRae, I know how horrible it is to have to keep eating gluten. It feels like you're poisoning yourself, and you basically are. But just keep reminding yourself that this is all just temporary, your biopsy will be done before you know it and you'll be able to start healing. Keep in mind that a lot of doctors recommend a minimum intake of gluten to ensure a positive biopsy - I was told this was quite high, like four pieces of bread a day. Again, it sucks big time, but it's only a few weeks of suffering compared to the rest of your life feeling better.

Hang in there. Best of luck with the biopsy, do let us know how it goes. Don't forget to ask for sedation (or hell, general anaesthetic), I made that mistake and sincerely regret it.

mushroom Proficient
mushroom
Posted

Wow, you get seen quickly in the US! I had to wait two months from blood test diagnosis to biopsy, and it would have been four if I hadn't made a fuss. And this was after I waited six weeks for my blood test results because they lost them the first time :rolleyes:

Yes, I am currently dealing with the British-type system of medicine in New Zealand; I swear to God that they hope you die before you actually have to come in for an appointment. It's cheaper that way :P On the other hand the squeaky wheel does get greased and I squawked pretty loudly, and my GP squawked too!! but still they are going to rerun all the tests I had done in the U.S. - what is it with these doctors who don't trust anything they haven't run themselves? :rolleyes: What a waste of resources :blink:

englishrose Newbie
englishrose
Posted

Yes, I am currently dealing with the British-type system of medicine in New Zealand; I swear to God that they hope you die before you actually have to come in for an appointment. It's cheaper that way :P On the other hand the squeaky wheel does get greased and I squawked pretty loudly, and my GP squawked too!! but still they are going to rerun all the tests I had done in the U.S. - what is it with these doctors who don't trust anything they haven't run themselves? :rolleyes: What a waste of resources :blink:

I know, tell me about it, I had my blood tests run three times before I got my biopsy! (Only got two sets of results though). I was moving at the time as well - I go to uni in London and live down in Dorset in the holidays, so they were originally gonna make me wait from the beginning of June until the beginning of October to get a referral! Then the actual biopsy would have been maybe November? I had to register temporarily with a different GP and literally cry and beg to get the biopsy done in August. Honestly, bloody NHS, but that's the price you pay for free healthcare. Wouldn't swap it for the world. Man, I really hope everything gets sorted out for you asap, and that you don't exsanguinate before you get your diagnosis ;D

dnshaussler Newbie
dnshaussler
Posted

I too have recently been diagnosed with Celiacs disease, as much as I can tell you I thought it was like a death sentence, I have recently realized that I never really knew until now what it felt like to feel good. I am 40 years old and have fought cancer in my reproductive organs 3 times. After a hysterectomy and years of struggling with crazy issues and illnesses and new diagnosis, that a year later no longer seemed to aligh to how I was feeling of what tests would say..I was finally hospitalized for colo-vaginal fistula as a result of Crohns, (which my father has) and been trying to figure out what the cause of my up and down blood pressure was, the 50 lb weight gain in the last year as well as elevated liver enzymes. It was a recent biopsy that diagnosed me, and within 48 I changed my diet to Gluten-free. It has only been a few weeks of eating gluten-free, but I have realized that this change in lifestyle and eating has given me a new lease on life. I have really never felt this good.

So I hear where you are coming from and can only tell you to hang in there and do whatever you have to get through the time prior to your test. If you have Celiacs and make the changes you need to, you will not regret it. Keep calling your doctor to schedule your test, go there if you have to, but don't get discouraged, keep pushing. :-)

Reba32 Rookie
Reba32
Posted

depending which province you're in RaeRae, you may be in for a *very* long wait!

Archived

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

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


  • Member Statistics

    • Total Members
      131,949
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.