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

Am I Stuck Like This?


BrainStorm-wow

Recommended Posts

BrainStorm-wow Apprentice

I have been sensitive to MSG now for away. If I have MSG I get a migrain that last for amost 24 hours. Lately I've been having headache after eatting oat meal and shredded wheat, which I've eatten countless time without a problem. I also got a headache, when I ate rye bread from whole foods. The other breads I ate whole foods didn't give me a headache, but this one did and the only thing in it that was different is that it contained rye flour. I read somewhere, that lactose and gluten both work on something in the stomach, I can't remember what it was I just remember reading they were related. I have been drinking alot more milk lately though, but milk itself never gives me a problem. When I get these eadaches, they last about 3 hours. The headaches I've been having are no where near as severe as the MSG migrains I get. I'd like to be able to eat bread and wheat and not worry about it. Am I stuck like this? This just happened recently, so is there hope? When I get headaches, it mainly hurts on the left side of my head, if that means anything.


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



Celiac.com Sponsor (A8-M):



rinne Apprentice

Hi. :)

If you want reassurance that gluten is not a problem for you, you might be at the wrong site. :) Most of us here know gluten is a problem and the symptoms you are describing are completely consistent with gluten intolerance and celiac.

I started out with headaches, I wish I had know there was such a thing as celiac back then, MSG sensitivity, boils, just generally toxic and this was with me largely avoiding wheat because I knew I had a problem with it. ;)

Sounds like you are beginning to notice it is a problem for you. There may be other factors than celiac in developing a gluten intolerance and worth investigating, keeping a food journal is helpful in tracking the patterns. There are studies linking antibiotic use with digestive problems.

Do you have any other health concerns?

BrainStorm-wow Apprentice
Hi. :)

If you want reassurance that gluten is not a problem for you, you might be at the wrong site. :) Most of us here know gluten is a problem and the symptoms you are describing are completely consistent with gluten intolerance and celiac.

I started out with headaches, I wish I had know there was such a thing as celiac back then, MSG sensitivity, boils, just generally toxic and this was with me largely avoiding wheat because I knew I had a problem with it. ;)

Sounds like you are beginning to notice it is a problem for you. There may be other factors than celiac in developing a gluten intolerance and worth investigating, keeping a food journal is helpful in tracking the patterns. There are studies linking antibiotic use with digestive problems.

Do you have any other health concerns?

Constipation, but I've had that problem on and off for awhile.

rinne Apprentice

Constipation was a major issue for me. :(

I know the stereotype of celiac is diarrhea but it is not always the case.

In my twenties I started having migraines, it was also when I started working in a bakery. I would come home from work and whether I had eaten anything there or not I would fall into a kind of drugged sleep. When I woke my mouth was dry and I felt like I had a hangover.

I thought it was the sugar. :rolleyes: I thought just inhaling it. :unsure: No-one 30 years ago talked about gluten intolerance.

Ten years later I still had migraines and I boils and hypoglycemia and weight gain and, of course, constipated because for me that was normal.

Ten and some years later, after a tick bite and rash, I collapsed, menopausal too! My digestive system was on fire and nothing I did seemed to help. I spent nearly two years in bed with doing one thing a day being a good day. I did the laundry. I made soup.

My experience is that the inevitable outcome of continuing to eat gluten if gluten is a problem is that it will get worse, it just doesn't go away whatever the cause is.

Sorry. :(

lindalee Enthusiast

Rye would always give me the immediate headache. MSG is hard to avoid especially if we eat out. Does anyone ask the server "No MSG"? I am trying to figure out the dry mouth also. I usually wake up once or twice and have a few sips of water. I am not sure what is causing this.

Lee

home-based-mom Contributor
Constipation was a major issue for me. :(

I know the stereotype of celiac is diarrhea but it is not always the case.

In my twenties I started having migraines, it was also when I started working in a bakery. I would come home from work and whether I had eaten anything there or not I would fall into a kind of drugged sleep. When I woke my mouth was dry and I felt like I had a hangover.

I thought it was the sugar. :rolleyes: I thought just inhaling it. :unsure: No-one 30 years ago talked about gluten intolerance.

Ten years later I still had migraines and I boils and hypoglycemia and weight gain and, of course, constipated because for me that was normal.

Ten and some years later, after a tick bite and rash, I collapsed, menopausal too! My digestive system was on fire and nothing I did seemed to help. I spent nearly two years in bed with doing one thing a day being a good day. I did the laundry. I made soup.

My experience is that the inevitable outcome of continuing to eat gluten if gluten is a problem is that it will get worse, it just doesn't go away whatever the cause is.

Sorry. :(

Constipation may have been normal for you but it is not "normal." Your body was not designed to function that way.

Were you tested and treated for Lyme?

rinne Apprentice
Constipation may have been normal for you but it is not "normal." Your body was not designed to function that way.

Were you tested and treated for Lyme?

No kidding, as you say normal for me did not mean normal and constipation is always a sign of problems, if not in the short term then in the long term.

I was tested for Lyme and treated it with nutraceticals.


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



Celiac.com Sponsor (A8-M):



theclutterhouse Newbie
Constipation, but I've had that problem on and off for awhile.

Hi,

I'm 37 and it wasn't until my son was diagnosed that I found out what was wrong with me for 37 years. I always had problems with headaches and at times was hospitalized from the migranes. I also suffered with constipation. MSG always killed me! I have many other issues but from what I see your going through, it sounds to me that you should be tested. I would suggest that you get a blood test done. It is called TTG. There are 2 tests but this one seems to be the most accurate. Also, my daughter whom they said did not have it because of the number on the blood test was biopsied (at the request of myself and my husband) and was full of it. I must encourage you that the biopsy really is the only accurate test that will tell everything you need to know.

I hope this helps. Remember, this disease is misdiagnosed ALL the time. You really need to find out what is going on so that you start feeling better. You don't want to cause anymore damage to your body and the sooner you go gluten-free (that is if it's Celiac's), the sooner you can repair the damage and start to heal.

Good Luck,

theclutterhouse

theclutterhouse Newbie
No kidding, as you say normal for me did not mean normal and constipation is always a sign of problems, if not in the short term then in the long term.

I was tested for Lyme and treated it with nutraceticals.

Hello,

I'm 37 and suffered most of my life with sever constipation. I was recently diagnosed with Celiac's but I still have problems. I keep seeing this Lyme disease in many postings. I did live in Tennesse as a child in a tick infested area. I have grown up in the woods. My dad is an avid hunter etc. as was I. Also, I was diagnosed with Fibromyalgia about 5 or 6 years ago. I suffer from severe pain deep in the bones on a daily basis. There are days I can't move. Do you think it could be something else?

What test do you recommend for the Lyme disease? I have seen that the blood test is not very accurate and that the urine test best? Also, would this be something they could tell after so many years?

Thanks so much,

theclutterhouse

rinne Apprentice
Hello,

I'm 37 and suffered most of my life with sever constipation. I was recently diagnosed with Celiac's but I still have problems. I keep seeing this Lyme disease in many postings. I did live in Tennesse as a child in a tick infested area. I have grown up in the woods. My dad is an avid hunter etc. as was I. Also, I was diagnosed with Fibromyalgia about 5 or 6 years ago. I suffer from severe pain deep in the bones on a daily basis. There are days I can't move. Do you think it could be something else?

What test do you recommend for the Lyme disease? I have seen that the blood test is not very accurate and that the urine test best? Also, would this be something they could tell after so many years?

Thanks so much,

theclutterhouse

A gluten free diet may resolve many of your symptoms, it is worth giving it some time to see if it will before other testing, just my opinion. :)

I was tested through Igenex a lab in California, they do a test which is considered one of the most reliable tests for it.

BrainStorm-wow Apprentice

Well, I had a pastry today and got a headache. It is really hard now to live here. My grandmom yelled at me, because I don't want to eat wheat or gluten. She said eat what she has, or don't eat. Yeah, she's like that. I really think I do have something wrong and I'm not going to take aspirin everyday for headaches. I also need to learn about foods that are high in carbs and are gluten free. I'm trying to bulk up and may even get a job to pay for some of my food, which seems like I'm going to have to do.

rinne Apprentice
Well, I had a pastry today and got a headache. It is really hard now to live here. My grandmom yelled at me, because I don't want to eat wheat or gluten. She said eat what she has, or don't eat. Yeah, she's like that. I really think I do have something wrong and I'm not going to take aspirin everyday for headaches. I also need to learn about foods that are high in carbs and are gluten free. I'm trying to bulk up and may even get a job to pay for some of my food, which seems like I'm going to have to do.

I'm sorry to hear that, it is hard to be ill and harder when there is little sympathy.

There is a learning curve to understanding what our bodies need, you will get there. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,572
    • Most Online (within 30 mins)
      7,748

    lizz Z
    Newest Member
    lizz Z
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.