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

Do Symptoms Get Worse Even If You Are gluten-free?


jen3175

Recommended Posts

jen3175 Rookie

Hi,

I've been gluten-free for about 4 months now and had a pretty good handle on it most of the time. I can't tolerate soy, dairy, spicy foods(tomato sauce) or peanuts anymore, so that has narrowed even my gluten-free choices down, pretty much bland food. I would always have a little pooch, but hey after losing 30 lbs. because of celiac, I wasn't complaining. I had to have heart surgery on 7/24. I'm 31 and the heart surgery was due to life threatening arrthymias. I'm technically perfectly heart health, except for the wiring :D Anyway, this is second surgery in 5 years, (let's hope this one works). I had to stop cardiac meds on Thursday before surgery,7/20. On Friday, I ate a "safe" lunch as usual and it hit like a ton of bricks. Pain, nasuea, literally doubled over. I had to leave work early. I've learned that when this starts the best thing to do is to not eat for at least 24 hrs. and let the episode pass. However, I had a little chicken for dinner, as I should try to keep up strength for surgery, and proceeded to throw up for the next 2 days. Called Cardiac Doc, he said to come in now, (Sun. afternoon) and gave me fluids and phinagren. Thank God!! Stayed overnite and had surgery following day. Now, my stomach has still been in upheaval after I got home from hospital. More throwing up and no food, and all that fun stuff. Had to go back to hospital on Friday, Aug.4th, to get "juiced up" again. Since Sat. evening, I've been back to square one, like I just started the gluten-free diet again. Very bland, whole foods. Rice, canned carrots, canned gb, ck breast. eggs, almond milk and tea. I'm still having nagging pain in my stomach, still burping my head off and still extremely nauseated in the mornings. What does you make of this? What did I do wrong? Can anyone else literally see their intestines ball up and move across the abs as they spasm? I'm going to a new GI on 8/16. Between heart surgery recovery and this, I need some anwsers. Can anyone help me??

Thanks -Jenny


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



Celiac.com Sponsor (A8-M):



sarahjo Newbie

Does your medicine have gluten in them? They say sometimes it does get worse, but i don't want to say that to you, with all your other medical problems i am a little earie that it isn't something else, how do you feel now?

oceangirl Collaborator
Does your medicine have gluten in them? They say sometimes it does get worse, but i don't want to say that to you, with all your other medical problems i am a little earie that it isn't something else, how do you feel now?

I agree that I would be nervous to advise where you have other serious issues, but, yes, I have seen my intestines "ball up" and move around before I found out about the gluten. Do check your medications- also, I,m very leery of any canned food. The carrots? Sometimes they put other things in the water in the can. I hope you feel better soon!

lisa

  • 2 weeks later...
KaitiUSA Enthusiast

Not only would I check your medications but I would check even products you use such as makeup and shampoo. I have never seen my intestines ball up and move as the food goes through my system and seriously that would freak me out if that happened. I do know that some people have had that before finding out about gluten and that could just be one of your symptoms but I would get that checked by a GI doctor. Have you had a blood test for celiac done recently? Blood tests are used to monitor compliance with the diet and if the levels are high still you are likely getting glutened somehow or have not cleared your body of the damage yet.

Guest dfs

Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,951
    • Most Online (within 30 mins)
      7,748

    SY8
    Newest Member
    SY8
    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
      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
      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
      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
    • DebJ14
×
×
  • 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.