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

Feel Like I'm Poisoning Myself

jmryan83

Recommended Posts

jmryan83 Rookie
jmryan83
Posted

My topic title says it all. I feel like I'm poisoning myself everytime I eat something with Gluten in it.

Forum members recommend to keep on a regular diet until testing can be done, but I don't know if I can do it.

I ate some macaroni and cheese today and have been sick all evening. Stomach cramps, diarrhea, and extreme lethargy.

On days when I've tried eliminating gluten I feel an immediate difference in my energy levels and stomach cramps.

 

Worst of all is I rely on my local public health system and it takes a month just to get a GP appointment. I have one about 3 weeks from now, but then I'll have atleast another month before I can see a specialist. I just don't know what to do.

 

Is it dangerous to just stop eating gluten without absolutely knowing if your a Celiac patient?

What's the worst that could happen to me if I just cut out the gluten and see how I feel in a month or two? (besides possibly screwing with any test results)

 

HELP!!!!

 

 

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Is it dangerous to just stop eating gluten without absolutely knowing if your a Celiac patient?

No, it is not. There is no essential nutrient in gluten that is not also in other foods.
SeekingSarah Apprentice
SeekingSarah
Posted

I feel the same way, originally my GI appt was for May, but I found another one who could see me sooner, appt on Monday! Having been brushed off by a GI a few years ago and told I had IBS...I have no idea what my blood results really sad I didn't suspect Celiac, never really knowing much about it so I didn't inquire further as to what tests he actually did, etc. So NOW I want to know, I want to see the results, I want the endoscope...I want the DX. I also don't want to go off Gluten and then have to re-gluten for tests, but again I was lucky to get a quick appt. I've seen others who don't necessary need/want an official dx go off Gluten so they can feel better...the decision is up to you really. 

jmryan83 Rookie
jmryan83
Posted
  • Author

Thanks for everyone sharing.

 

I've decided I'm going to give the next 3 weeks to my G.P. visit a try gluten-free.

 

I'll still have a full month to re-glutenize before I see any G.I. specialist.

 

I wonder since I can feel such a difference in such a short time if it's gluten intolerance or if I actually have damage which I heard can take months to repair?

 

 

EmiPark210 Contributor
EmiPark210
Posted

Most general practitioners can order a blood pannel test so I wouldn't recommend going off it. But staying on doesn't mean cheerios for breakfast, sandwiches for lunch, and pasta for dinner. It can mean as little as a half serving of wheat crackers, a piece of bread, a cookie (or two) per day. 3 weeks is enough time that if they tested you at that appointment, you could come back falsely negative.


I know it sucks. I was gluten free for 3 weeks before I got my biopsy scheduled and I just started back on it. It's hard, but it's a bit easier when you know that it is necessary to get your answers. Hang in there, and feel free to ask any questions that come up. 

 

And in terms of clearing up: some people (myself included) notice a change after a week, but some people take months to years to really start to feel like they're getting better. For testing, it's better not to risk being a great healer. You usually need a blood test to get sent for a biopsy, and blood tests take a recommended 3 months on gluten to be accurate (Open Original Shared Link)

Archived

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

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


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    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

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • 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.
×
×
  • 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.