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

Headaches Worse On Gluten Free Diet?


LizM

Recommended Posts

LizM Newbie

I've been having an ongoing headache since October of 07 (has never gone away). I've seen several doctors, including 3 neurologists, who cannot figure out what is wrong with me. My other symptoms are nausea and fatigue. I've had numerous tests (MRI, CT scan, EEG, bloodwork, etc) with everything always normal, and have been on numerous medications with no relief on any of them. I recently read some things that made me think my headaches could be linked to celiac/gluten intolerance. I had the blood test done for celiac, and it was negative. I decided to give the gluten free diet a try anyway.

I started the gluten free diet on Monday (6/30), and my headaches and fatigue have been worse all week. The headache was a little worse Monday afternoon/night, really bad Tuesday and Wednesday, then a little better from Thursday through today (but still worse than normal). No matter how much sleep I've gotten all week, I'm completely exhausted all the time. I was fatigued before, but not to this extent. Also, I seem to be hungry all the time. I'll eat a meal and be hungry again an hour or so later.

If it helps, this is my normal diet before beginning the gluten free diet, then what I've been eating this week. Before: cheerios and a banana for breakfast, sandwich and wheat thins/chips for lunch, and usually some type of meat and veggies for dinner (like fish and a salad or something)/pasta about 1-2x/week. This week: chex and a banana for breakfast, sandwich (on gluten free bread with gluten free lunchmeat) and gluten free chips for lunch, and dinners about the same as before (with gluten free pasta the one time I had pasta). I have not eaten out all week, except once at a local gluten free deli, to ensure that I'm not getting any contaminants.

I've read a few posts about gluten withdrawal, but shouldn't it be getting better after a week? Any ideas?

Thanks!


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



Celiac.com Sponsor (A8-M):



maile Newbie
If it helps, this is my normal diet before beginning the gluten free diet, then what I've been eating this week. Before: cheerios and a banana for breakfast, sandwich and wheat thins/chips for lunch, and usually some type of meat and veggies for dinner (like fish and a salad or something)/pasta about 1-2x/week. This week: chex and a banana for breakfast, sandwich (on gluten free bread with gluten free lunchmeat) and gluten free chips for lunch, and dinners about the same as before (with gluten free pasta the one time I had pasta). I have not eaten out all week, except once at a local gluten free deli, to ensure that I'm not getting any contaminants.

I've read a few posts about gluten withdrawal, but shouldn't it be getting better after a week? Any ideas?

Thanks!

as each person is different it might take you longer to see results, although with a 3 year long headache I can certainly imagine you'd like it gone asap!

one observation about your diet, have you considered cutting out all grains for a week or so? You were having quite a bit of gluten/wheat in your diet before and it looks like you replaced most of those with the equivalent gluten free versions.

many of us find, particularly in the beginning, that it's best to eat very simple, proteins, fruit, veggies and avoid the processed foods. If you are indeed celiac/gluten intolerant you could have issues with other foods as well and the easiest way to figure that out is to avoid the processed stuff and keep it clean.

mommida Enthusiast

I had memingitis and had to battle headaches for three years after.

If you want to try my relief tip, here it is. Smartwater (water supplemented with magnesium and patassium) with a sublingual vitamin B12 tablet. Deep breathing (imitate a smoker) remembering what it feels like not to have a headache. Stretch out your neck muscles by dropping your chin down to your chest and moving your head back and forth.

((If you have too much of these vitamins, it could cause you to have "D".))

Fiddle-Faddle Community Regular

I had headaches that the neurologist claimed was an atypical migraine disorder. I also had a B12 deficiency that may have been caused in part by gluten/malabsorption, but was mostly due to 10 years on acid blockers (like Prilosec), which are listed on B12 sites as being a primary cause of B12 deficiency (you NEED acid to properly absorb B12).

I was on the acid blockers in the first place due to severe reflux, which was a gluten reaction (but I didn't yet know about gluten).

The thing about acid blockers is that if you've been on them for several months or longer, then quitting them cold-turkey results in a strong rebound effect, where your reflux is WORSE than before you started the acid blockers. You have to wean off--but the doctors are unaware of this, and it's not even mentioned on the package insert, nor is the potential to develop B12 deficiency.

The same is true for ibuprofen and other headache medications. If you are on it long-term and try to stop taking it, you will very likely get a rebound headache that is worse than the headaches that originally sent you reaching for the iboprofen!

Neck issues also play a huge role in headaches, especially for those who spend too much time at the computer (hmmm, like everyone reading this???).

LizM Newbie

I do have a B12 deficiency, and my latest neurologist has put me on a daily sublingual B12. Prior to my headache beginning, I very rarely took any type of pain medicine (or any other type of medication). Since the problem started, I've been on and off different medications, and several times have been off of any meds for a month or more, including any over the counter meds (they don't help anyway). So I don't think I'm having any reaction to medication. As for the neck issues, the neurologist has checked my neck and hasn't seen any problems there either.

I guess eating clean for a while will be the way to go. It will be a little difficult for me due to my work, but I'll figure it out. Thanks again for the advice!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.