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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

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

      My only proof

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

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748

    Clare Durham
    Newest Member
    Clare Durham
    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

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.