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 Awful Despite The Gluten-free Diet.

Ephemeroptera

Recommended Posts

Ephemeroptera Newbie
Ephemeroptera
Posted

I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

Hi Ephemeroptera, and welcome to the forum.

I hope at least some of your symptoms have improved with the gluten free diet :) but sorry you are still having so many problems. First of not all people with rheumatoid problems test serum positive. My blood tests are RA negative, have been all along. But that is because I actually have psoriatic arthritis, and not straight rheumatoid, I believe. People with polymyalgia rheumatica seem to test RA negative too. That is not to say that your problems are arthritis--not all joint pain is, it seems. Several posters have reported joint pain that disappeared along with the gluten, so it is disappointing for you that yours hasn't.

The first question I would ask is whether you have had the following tests done: Vitamin D, B12, folate, iron, potassium, calcium and magnesium, and thyroid (TSH FT3 and FT4) and ANA antibodies?? If not, I would request your doctor to run these tests because celiacs often end up deficient in these nutrients. Have you tried a magnesium supplement for your constipation? It can't hurt and it might just help your joints too. Feeling cold could be a sign of hypothyroidism which celiacs often develop, so I do think the thyroid test is important. If you have not had any of these tests done, finding the answers might provide you with some important clues.

If you have had them done, let us know your results; if you haven't had them done I would urge you to do so. Get a copy of your lab reports and let us know the results and ranges the lab uses.

Here's to feeling better soon. :)

AKcollegestudent Apprentice
AKcollegestudent
Posted
I've been on a gluten-free diet for close to nine months now, yet I'm still experiencing symptoms I had prior to my diagnosis. Joint pain still appears and fades frequently. I was tested for rheumatoid arthritis and the test was negative, so that's not it. I'm often backed up, going to the bathroom only every 2-3 days. I also seem to have extremely poor circulation and I am always freezing. Last week, it felt like a rubber band was wrapped tightly around my right knee, causing a ridiculous amount of pain from the knee down. I always feel weak and fatigued. I'm only 17-years-old and I feel as if I'm falling apart. Is there possibly something more to this than just celiac disease?

Your symptoms sound very similar to mine, and I have to ask this: have you looked for other food intolerances? I have celiac, but soy and dairy both set me off really badly; I also react to medications that have come into contact with any of the above allergens/ingredients. For me, the joint pain and limb pain is closely tied to both dairy and gluten; if either one is ingested, either can come back. Admittedly, my circulation hasn't really improved--I'm still cold all the time, but I'm giving that time. But yes--being really young and still falling apart sucks. I'm 20, and it sucks trying to explain to people that no, really, I do feel like poop and have an autoimmune disorder.

Emalemmaly Newbie
Emalemmaly
Posted
Your symptoms sound very similar to mine, and I have to ask this: have you looked for other food intolerances? I have celiac, but soy and dairy both set me off really badly; I also react to medications that have come into contact with any of the above allergens/ingredients. For me, the joint pain and limb pain is closely tied to both dairy and gluten; if either one is ingested, either can come back. Admittedly, my circulation hasn't really improved--I'm still cold all the time, but I'm giving that time. But yes--being really young and still falling apart sucks. I'm 20, and it sucks trying to explain to people that no, really, I do feel like poop and have an autoimmune disorder.

haha no way! you guys I hate to say this but as one extremely sad and fatigued 20 year old to the next we have to bound together. I've been for SURE diognosed with gluten and casein intolerances but I thought maybe soy too cause my dad has a mild allergy to that and I thought I wasn't feeling very well after eating it but I'm pretty sure I've been off it for a while now and I'm still getting what I call "super fatigue" and my knee is killing me. I used to exercise almost every day but I just don't have the motivation any more and I can't seem to shake the GI problems of constipation and bloating. I was fine ALL DAY until I just had a cup of coffee and the bridge of my nose has pressure in it again. Seriously... wt-eff? Why!!!!? I've been gluten-free for 2 weeks now and driving myself (and my family and roommates) nuts with speculations and possible further allergies I've possibly got. I'm reading about all these gluten withdrawls and I'm starting to become depressed.. will it ever go away!? I WAS FINE 2 YEARS AGO!!

Uhg. So frustrating.

AKcollegestudent Apprentice
AKcollegestudent
Posted

Emalemmaly,

I didn't start *drastically* improving dairy-free, soy-free and gluten-free for close to a month; almost five months in, I still have days when I just don't feel well. My energy levels are still not where they used to be a year ago or two years ago, when the symptoms were less severe. But there's been a couple instances where stupidity (both mine and other people's) have made me go, "Wait, why am I having symptoms?" Soy, for instance, got into my diet for two straight weeks because my college only cooked things in soy oil. It wasn't until I tracked down a cook in every dining hall that we figured out the problem. It could be that you only think you're completely soy free. And as one of my profs reminded me at dinner, even if you're not allergic to soy, soy sauce has wheat in it, so you could be reacting to that.

But it will go away. Eventually. For now, hang in there and find a cookie. (I'd suggest a peanut butter cookie if you can have nuts; there's a simple recipe floating around that doesn't have any of the specialty flours in it. Just google "gluten free peanut butter cookie" or "flourless peanut butter cookie.)

chatycady Explorer
chatycady
Posted

I'm sorry you are feeling so poorly, but you will get better. Just think positive and start working on healing your digestive system.

Intolerance are common, but don't have to be lifelong. Cure your tummy and you will be able to eat normal foods again. (gluten free of course)

Probiotics, vitamins, enzymes and good food - fresh fruits and veggies and fresh meat, should get you on the path to recovery!

Ephemeroptera Newbie
Ephemeroptera
Posted
  • Author

Thank you for all of the help. I have not had those tests done, but I'll be sure to do so.

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

Celiac.com Sponsor (A8-M):


srthomas21 Explorer
srthomas21
Posted

Just a note on probiotics. They really do work. The best one for me is call PB8 . Its cheap and has really helped me. I've also tried Align and VSL # 3 both of which didn't work very well for me. I would try PB8 first and if it doesn't work try some others. Pb8 doesn't have to be refrigerated which is nice and I take twice the recommended amount but start out with the recommended amount and if it doesn't seem to do much bump it up a little.

dilettantesteph Collaborator
dilettantesteph
Posted

In my case, I had to get much more rigorous with my gluten free diet before I could feel in good health. I cut out most processed foods.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      Does anyone here also have Afib

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

      Covid caused reoccurrence of DH without eating gluten

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

      New Celiac Mama in My 30s

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

      My only proof

      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...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,956
    • Most Online (within 30 mins)
      7,748
    Crismedin
    Newest Member
    Crismedin
    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.