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

Feeling Extremely Frustrated

stickymommy

Recommended Posts

stickymommy Newbie
stickymommy
Posted

yes extremely frustrated... I have been not well since february 15th and no one has been able to give me any idea of what it is. This has been going on since 1999 after having back to back miscarriages. I was told I had + ana that caused me to lose the babies and was told i had fibromyalgia. This frustrated me because i felt it was a garbage can diagnosis (just an easy way to say we don't know what is going on) The ana levels continued to fluctuate over the last ten years as have my symptoms between 5 pregnancies. In february i went thru a very traumatic incident and woke up the next day feeling worse than I had ever felt before. extreme fatigue, muscle aches and weakness, joint and tendon pain, irritability, mental confusion, diarrhea, constipation, bloating, gas,inability to remember anything, chest pain, trouble breathing, pain when i take a deep breathe, ulcers in mouth, hair falling out, weird blistery rash on arms ,elbow,knees and fingers, periods of feeling faint- four times the fainting spells have been so bad they thought i was having a stroke, i become very disoriented, loss control of my body especially legs and arms, and can not speek. As the weeks progressed i could hardly function an d at times didnt know if my legs would hold me up. I often fell strange in my head, like i am moving sideways when going forward. I have been tested for strokes, lupus, ms and sjorgrens- not enough positive in one area to positively diagnose. I recently went on a cleansing diet and removed all gluten from my diet and I felt wonderful. So i asked my primary about gluten. she sent me to a gastro. he said i sounded like a perfect candidate for celiacs. I finally found someone who had a n idea. I was very hopeful. My blood came back neg. Today I had endo and colonoscopy, doctor said all looked ok. I feel frustrated. I was hoping for something.

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

Celiac.com Sponsor (A8-M):


homemaker Enthusiast
homemaker
Posted
yes extremely frustrated... I have been not well since february 15th and no one has been able to give me any idea of what it is. This has been going on since 1999 after having back to back miscarriages. I was told I had + ana that caused me to lose the babies and was told i had fibromyalgia. This frustrated me because i felt it was a garbage can diagnosis (just an easy way to say we don't know what is going on) The ana levels continued to fluctuate over the last ten years as have my symptoms between 5 pregnancies. In february i went thru a very traumatic incident and woke up the next day feeling worse than I had ever felt before. extreme fatigue, muscle aches and weakness, joint and tendon pain, irritability, mental confusion, diarrhea, constipation, bloating, gas,inability to remember anything, chest pain, trouble breathing, pain when i take a deep breathe, ulcers in mouth, hair falling out, weird blistery rash on arms ,elbow,knees and fingers, periods of feeling faint- four times the fainting spells have been so bad they thought i was having a stroke, i become very disoriented, loss control of my body especially legs and arms, and can not speek. As the weeks progressed i could hardly function an d at times didnt know if my legs would hold me up. I often fell strange in my head, like i am moving sideways when going forward. I have been tested for strokes, lupus, ms and sjorgrens- not enough positive in one area to positively diagnose. I recently went on a cleansing diet and removed all gluten from my diet and I felt wonderful. So i asked my primary about gluten. she sent me to a gastro. he said i sounded like a perfect candidate for celiacs. I finally found someone who had a n idea. I was very hopeful. My blood came back neg. Today I had endo and colonoscopy, doctor said all looked ok. I feel frustrated. I was hoping for something.

I too tested negative...Went gluten free anyway...and felt so much better! You could always give it a try!

stickymommy Newbie
stickymommy
Posted
  • Author
I too tested negative...Went gluten free anyway...and felt so much better! You could always give it a try!

I know I should, I don't know why I feel like I need a doc to tell me what to do. I just keep worrying what if it is something really bad. I have four children that shows signs also, including itp. My teenage daughter has the same symptoms as me. Gluten free here we come.

Swimmr Contributor
Swimmr
Posted
I know I should, I don't know why I feel like I need a doc to tell me what to do. I just keep worrying what if it is something really bad. I have four children that shows signs also, including itp. My teenage daughter has the same symptoms as me. Gluten free here we come.

Over the last few years I had a sudden onset of what looks to be anxiety or panic attacks, eye sight problems, and balance issues (running into walls, corners), and real bad forgetfulness...however I was quickly given a prescription for Ativan and was told I have anxiety and was sent on my way. I ASKED for an MRI and was denied by two completely different doctors. They thought I was just being paranoid. They tested me for celiac by blood and it was negative but they will not do a biopsy...they said I have negative blood tests, no need to test it elsewhere.

So I am in search, as well, for a doc that is as concerned as I am.

I do know that going gluten and wheat free has made me tons better, but still in the process of learning what else my body can't handle...

Keep on truckin'!

lizard00 Enthusiast
lizard00
Posted

stickymommy,

Were you gluten-free at the time of your testing? If so how long? That can affect the results of your test, as you have to be consuming gluten to have a shot at having accurate test results. And then of course, there are just people who will test negative. If you felt wonderful on the diet, then it seems as though you have found what's ailing you.

stickymommy Newbie
stickymommy
Posted
  • Author
stickymommy,

Were you gluten-free at the time of your testing? If so how long? That can affect the results of your test, as you have to be consuming gluten to have a shot at having accurate test results. And then of course, there are just people who will test negative. If you felt wonderful on the diet, then it seems as though you have found what's ailing you.

No i was told not to go gluten-free, but the day before test while fasting certainly did not have that yucky hungover feeling like i normally do.

TrillumHunter Enthusiast
TrillumHunter
Posted

Did you cut out gluten for any length of time? If so, it can take a while of eating gluten again before you will test positive.

If your dd has never be gluten-free, why not test her? That might answer your question as well.

Just a thought.

Good luck and remember you have the greatest interest in your good health.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    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.