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 Come And Go?


familyfirst

Recommended Posts

familyfirst Rookie

My DS's GI has ruled out Celiac disease(however, we see him on Monday and I'm going to probe him for more answers). He is still having minor syptoms after 3 weeks straight of D and stomach pain. He still has major stomach pain, but the D has disappeared even to the point of constipation. He also is now having major headaches with a heat feeling inside his entire body! He is on Nulev for D and stomach pain. He is having such extreme symptoms, I just don't know what to think...

Like I said, if the dr. doesn't give us more definate answers on Monday, I'm going to try the gluten-free diet and forget the medical dr. It won't hurt anything.

My question to the forum is...

Can you have symptoms that go away and start again? Or change over time?

Has anyone have a hot feeling inside their whole body and headaches?


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



Celiac.com Sponsor (A8-M):



Generic Apprentice

Absolutely! I started having stomcah issues at the age of 1-1/2 or 2 years of age. My sysmptoms came and went for years, I never knew when I would get sick. I was finally diagnosed at 13 years of age due to the symptoms being a daily occurence.

I was always a D sufferer but some people get C, or both C and D. I put out tremendous amounts of heat when I eat gluten. I also suffered from migraines rather frequently prior to going gluten-free.

ravenwoodglass Mentor

Yes, except for the ataxia all my symptoms were 'come and go' for many years. A lot of damage was done in those years.

I was 30 before the D became a daily occurance and my intermittant joint pains became a daily agony. I did not show up in blood tests and no one told me anything about the diet other than I should be glad I did not have to be on it, yea right. Oh yea, and the children who are both honor students with never a grade below a B and usually A's in college, just didn't want to go to school, oh and they were depressed so have a pill. Whoops, got off on a bit of a rant there.

I am so glad to hear you will be doing the diet no matter what the tests outcome. It is the best way to find those of us who are not lucky enough to show positive. Only 6 months before I was diagnosed by an allergist (MD) my DD told me the family would understand if I killed myself. That allergist saved both my and my families life, without him and the dietary elimination and challenge (not the weeks that GI want, he had me stop as soon as my D came back). If only we had known when my children were little. It would have saved them so much pain and for my DD permanent disfigurement and my DS permanent severe growth stunting.

familyfirst Rookie
Yes, except for the ataxia all my symptoms were 'come and go' for many years. A lot of damage was done in those years.

I was 30 before the D became a daily occurance and my intermittant joint pains became a daily agony. I did not show up in blood tests and no one told me anything about the diet other than I should be glad I did not have to be on it, yea right. Oh yea, and the children who are both honor students with never a grade below a B and usually A's in college, just didn't want to go to school, oh and they were depressed so have a pill. Whoops, got off on a bit of a rant there.

I am so glad to hear you will be doing the diet no matter what the tests outcome. It is the best way to find those of us who are not lucky enough to show positive. Only 6 months before I was diagnosed by an allergist (MD) my DD told me the family would understand if I killed myself. That allergist saved both my and my families life, without him and the dietary elimination and challenge (not the weeks that GI want, he had me stop as soon as my D came back). If only we had known when my children were little. It would have saved them so much pain and for my DD permanent disfigurement and my DS permanent severe growth stunting.

Thank you for your support. I would hate the fact that I listened to an MD and didn't stop the gluten, and my child develop cancer or such because I didn't do the diet. I'm taking a gut(no pun intend) feeling on this and doing the gluten free diet. I also am due for my appt., so I think I'm going to ask for bloodwork as well. I had C when I was younger. So bad that I would miss family gatherings and would be depressed forever about that. I'm thinking I have celiac disease as well as maybe my DD. She has severe excema, mood swings galore, and bloated. Like I said above, it won't hurt anyone if we all went gluten free.

familyfirst Rookie
Yes, except for the ataxia all my symptoms were 'come and go' for many years. A lot of damage was done in those years.

I was 30 before the D became a daily occurance and my intermittant joint pains became a daily agony. I did not show up in blood tests and no one told me anything about the diet other than I should be glad I did not have to be on it, yea right. Oh yea, and the children who are both honor students with never a grade below a B and usually A's in college, just didn't want to go to school, oh and they were depressed so have a pill. Whoops, got off on a bit of a rant there.

I am so glad to hear you will be doing the diet no matter what the tests outcome. It is the best way to find those of us who are not lucky enough to show positive. Only 6 months before I was diagnosed by an allergist (MD) my DD told me the family would understand if I killed myself. That allergist saved both my and my families life, without him and the dietary elimination and challenge (not the weeks that GI want, he had me stop as soon as my D came back). If only we had known when my children were little. It would have saved them so much pain and for my DD permanent disfigurement and my DS permanent severe growth stunting.

Thank you for your support. I would hate the fact that I listened to an MD and didn't stop the gluten, and my child develop cancer or such because I didn't do the diet. I'm taking a gut(no pun intend) feeling on this and doing the gluten free diet. I also am due for my appt., so I think I'm going to ask for bloodwork as well. I had C when I was younger. So bad that I would miss family gatherings and would be depressed forever about that. I'm thinking I have celiac disease as well as maybe my DD. She has severe excema, mood swings galore, and bloated. Like I said above, it won't hurt anyone if we all went gluten free.

mamabear Explorer
Yes, except for the ataxia all my symptoms were 'come and go' for many years. A lot of damage was done in those years.

I was 30 before the D became a daily occurance and my intermittant joint pains became a daily agony. I did not show up in blood tests and no one told me anything about the diet other than I should be glad I did not have to be on it, yea right. Oh yea, and the children who are both honor students with never a grade below a B and usually A's in college, just didn't want to go to school, oh and they were depressed so have a pill. Whoops, got off on a bit of a rant there.

I am so glad to hear you will be doing the diet no matter what the tests outcome. It is the best way to find those of us who are not lucky enough to show positive. Only 6 months before I was diagnosed by an allergist (MD) my DD told me the family would understand if I killed myself. That allergist saved both my and my families life, without him and the dietary elimination and challenge (not the weeks that GI want, he had me stop as soon as my D came back). If only we had known when my children were little. It would have saved them so much pain and for my DD permanent disfigurement and my DS permanent severe growth stunting.

You have definitely earned the right to rant. I feel bad for the medical community's ignorance of celiac disease then and still now. At least ONE doctor of yours could figure it out. I am so sorry.

If we were 100% symptomatic 100% of the time.....it'd be a lot easier to figure out and I guess we'd all be diagnosed by the time we were out of diapers. So the answer to familyfirst's question is YES.

FabulaScribe Newbie

I'm new here and just began eating gluten-free 8 days ago after suspecting a wheat problem for many years, but not realizing I needed to give up all glutens in order to avoid the problem. I'm learning now, and have just had the most productive week I've had at work in years - literally.

Anyway, the reason I'm replying to this topic is because when I read that someone said they have had stomach problems since childhood, a lightbulb went on for me. I had a peptic ulcer when I was 5 1/2, and I've always wondered why. I think at the time, the doctor said I was born with a weak stomach lining or something. I'm 43 now, so that was a long time ago. But I was wondering if that ulcer was related to this. Has anyone else had ulcers, especially at a young age?


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



Celiac.com Sponsor (A8-M):



Ed-G Newbie
Can you have symptoms that go away and start again? Or change over time?

Has anyone have a hot feeling inside their whole body and headaches?

I don't think everyone has the same symptoms either. I know I don't have the abdominal pain most have, though I do go from D to C and back again, have nice smelly stools, and have have the remains of red pimples on my back and sides (and I haven't even heard of DH until I began researching celiac disease on the net).

I'm in a venting mood, so forgive me if I'm grousing a bit much.

Ed in MD

Archived

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

  • 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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,810
    • Most Online (within 30 mins)
      7,748

    rdwells
    Newest Member
    rdwells
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.