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

Please Help


Jode

Recommended Posts

Jode Newbie

I feel like I am going nuts! I will list my symptoms and I hope someone can tell me if these could be gluten related or if something else is going on and you can recommend any other tests.

I will be 40 in two weeks I am female. I have had acid reflux disease since I was 9. I had The Nissen Fundo to correct the problem last June since the meds for the reflux made me sick. I have had low thyroid since my 20's ( I believe I had it since I was at least 17 but wasn't diagnosed). I had a partial hysterectomy for heavy periods from my thyroid in 2006. I have always had stomach problems my sister and Mother also have digestive problems. About a month ago I went into my see a Physicians assistant to have my thyroid tested because I was having symptoms that seemed to be like my thyroid problems. Fatigue was the major one. She tested that and my iron levels and my Ferritin level was at 24 (range:11-300) I was told this was not low enough to give me these symptoms. But my thyroid was normal. She basically told me to see a primary physician as she couldn't help with my symptoms. I made an appointment to see my general Dr. this coming Sunday (he works weekends only he's a senator too). My sympoms that I am feeling the last few Months are.....

1.Severe fatigue that I was put on anti depressants for

2.Bad joint pain especially in my hips and back

3.muscle spasms in back and a feeling of immflamation

4.mental confusion

5.Severe bloating and stmache aches (assumed it was from my Nissen surgery)

6.Gassy (also told from surgery)

7.allergies which I'm doing shot therapy 2 times a week

8. sores on tongue and mouth and in nose (have had this for years)

9. itching on back of scalp and neck

10. muscle weakness

11. Heart palpitations

12. shortness of breath

13. swelling under eyes (especially my right one) and black circles (also for yrs)

14. irritability

15. extreme low libido (tested and was low on testosterone and was put on a progesterone test cream and it is not helping)

16.iron deficiency

17.anxiety

18.unable to lose weight

What's weird is I started eating walnuts about a month ago and it has kept me very regular. Before that I had to take something to help me go. I'm usually constipated.

But what really scared me was my Grandmas funeral was yesterday and about an hour and a half before, I was getting ready and I started getting a stomache ache which didn't concern me as I have a stomache ache about 85% of the time anyway. But it got worse and worse. I felt like I needed to throw up like I was getting the flu. by the time we needed to leave to go I was very sick. I started losing feeling in both arms and had a severe pain in my upper gut. I sat in the car for awhile hoping it would subside. I could barely speak and I was extremely weak. My husband helped me in but I got so weak I was shaking. I decided to leave and after I came home I got in bed and I started to feel better about 2 hours later. But now I am so fatigued once again and my hip and back pain is awful. I do have a gastro Dr. but he seems so useless. I feel like my primary Dr at least fakes listening to me. But he just wants to put me on antidpressants and anxiety meds like he doesn't know what else to do.

Should I ask to be tested for celiac and what if he says he doesn't think I need to be?

Is there any other tests I should take?

This is really scaring me. I feel like there is something really wrong.

Thanks for any suggestions or advice.

I have had a colonoscopy. Had my gallbladder tested. I decided not to eat my wheat toast this morning and just have an egg and so far I'm not having my usual stomache ache. Or what usually feels like i'm trying to "pass glass".


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



Celiac.com Sponsor (A8-M):



Jode Newbie

Oh yes and I forgot about the dizziness I have had off and on since 2004.

ravenwoodglass Mentor
I feel like I am going nuts! I will list my symptoms and I hope someone can tell me if these could be gluten related or if something else is going on and you can recommend any other tests.

I will be 40 in two weeks I am female. I have had acid reflux disease since I was 9. I had The Nissen Fundo to correct the problem last June since the meds for the reflux made me sick. I have had low thyroid since my 20's ( I believe I had it since I was at least 17 but wasn't diagnosed). I had a partial hysterectomy for heavy periods from my thyroid in 2006. I have always had stomach problems my sister and Mother also have digestive problems. About a month ago I went into my see a Physicians assistant to have my thyroid tested because I was having symptoms that seemed to be like my thyroid problems. Fatigue was the major one. She tested that and my iron levels and my Ferritin level was at 24 (range:11-300) I was told this was not low enough to give me these symptoms. But my thyroid was normal. She basically told me to see a primary physician as she couldn't help with my symptoms. I made an appointment to see my general Dr. this coming Sunday (he works weekends only he's a senator too). My sympoms that I am feeling the last few Months are.....

1.Severe fatigue that I was put on anti depressants for

2.Bad joint pain especially in my hips and back

3.muscle spasms in back and a feeling of immflamation

4.mental confusion

5.Severe bloating and stmache aches (assumed it was from my Nissen surgery)

6.Gassy (also told from surgery)

7.allergies which I'm doing shot therapy 2 times a week

8. sores on tongue and mouth and in nose (have had this for years)

9. itching on back of scalp and neck

10. muscle weakness

11. Heart palpitations

12. shortness of breath

13. swelling under eyes (especially my right one) and black circles (also for yrs)

14. irritability

15. extreme low libido (tested and was low on testosterone and was put on a progesterone test cream and it is not helping)

16.iron deficiency

17.anxiety

18.unable to lose weight

What's weird is I started eating walnuts about a month ago and it has kept me very regular. Before that I had to take something to help me go. I'm usually constipated.

But what really scared me was my Grandmas funeral was yesterday and about an hour and a half before, I was getting ready and I started getting a stomache ache which didn't concern me as I have a stomache ache about 85% of the time anyway. But it got worse and worse. I felt like I needed to throw up like I was getting the flu. by the time we needed to leave to go I was very sick. I started losing feeling in both arms and had a severe pain in my upper gut. I sat in the car for awhile hoping it would subside. I could barely speak and I was extremely weak. My husband helped me in but I got so weak I was shaking. I decided to leave and after I came home I got in bed and I started to feel better about 2 hours later. But now I am so fatigued once again and my hip and back pain is awful. I do have a gastro Dr. but he seems so useless. I feel like my primary Dr at least fakes listening to me. But he just wants to put me on antidpressants and anxiety meds like he doesn't know what else to do.

Should I ask to be tested for celiac and what if he says he doesn't think I need to be?

Is there any other tests I should take?

This is really scaring me. I feel like there is something really wrong.

Thanks for any suggestions or advice.

I have had a colonoscopy. Had my gallbladder tested. I decided not to eat my wheat toast this morning and just have an egg and so far I'm not having my usual stomache ache. Or what usually feels like i'm trying to "pass glass".

Yes you should be tested for celiac. In addition, and not trying to scare you but...the symptoms I bolded could be indications that you had a heart attack. If it happens again call an ambulance to take you to the ER. You need to get back to your doctor as soon as you can and tell him about that incident. If your doctor won't listen to you find another as soon as you can.

Jode Newbie

Thanks for your reply. It's ironic you mention a heart attack. Last night I had bad chest pains that sat me straight up in bed with shortness of breath. When I got up this morning I was extremely fatigued and was still having chest pains. I went to the Dr and she tried to tell me I was having anxiety ( I knew that was coming) or allergies? Allergies? I have no idea where she came up with that. Oh yes I do I told her I was in shot therapy for allergies. I think if I told her i had a pickle for breakfast she would have tried to use that! She gave me a EKG and sent me on my way and told me to give it 2 months to see if I feel better. She didn't think it sounded like a heart problem. I researched online and it sounds exactly like a heart attack. She said I could do a stress test but basically made me feel like it would be a waste of money. She then looked right in my eyes and said "I'm stumped I dont know what to tell you". So I guess now I hope in the mean time something bad doesnt happen. I just never heard of allergies having those symptoms of a heart attack. Dr's are so useless! She aslo wouldn't check me for celiac even though she drew blood for lyme desease. She said to just stop eating bread to see if I feel better.

one more mile Contributor

Please read my profile I had a ton of things the matter to. I suspect that when anyone has so many systems going hay wire it is gluten. Go gluten free for a month then look at your list and see what is better. Just giving up toast may not make that much of a difference. I Just had all my body achs and pains return and walking problems start because I had taken a pill coated in wheat for three days. My doctor must still not get it. Gluten made me so ill in so many ways. I don't need tests to prove it, I have the way I feel and the way my family knows I have changed to prove to me how much of a change being gluten free has made my life. I have gone from 15 hours a day of sleeping to being up for a 4 day camping trip! It is a whole new life for me and can be for you also.

daphniela Explorer

Check out DoIHaveCeliac.org. They have a checklist of symptoms for you to bring into your doctor. That worked for me.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,957
    • Most Online (within 30 mins)
      7,748

    Dogdad21
    Newest Member
    Dogdad21
    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
      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
      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
×
×
  • 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.