Newbie coeliac struggling with persistent headaches

[EveT]

Hi there, 

I'm very new to this Coeliac business so apologies if this has been asked/answered already. As a brief background, I suffered a stress fracture in my foot in February. I was not doing enough exercise to warrant this type of fracture so my doctor ordered blood tests which strongly suggested Coeliac, later confirmed with an endoscopy and biopsy. Following the endoscopy, I went gluten free and within a week I was feeling so much better than I had been, my gastro symptoms started to improve, my headaches had gone away, and I had more energy (still nowhere near normal but was a lot better than previously). However, following this short burst of feeling better, I began to feel worse again, the main symptom being a really horrible, thumping headache/migraine that I used to associate with gluten. I've been very careful with not eating gluten, so I'm wondering if this is normal to still experience symptoms a couple months after you stop eating gluten? I would be grateful if there are any more experienced people with Coeliac out there who could tell me if still experiencing headaches after going gluten free is normal. Does it take a while for your body to be truly free of gluten? Or is sharing a toaster enough to elicit a reaction like this?

As an aside, does anyone have experience of fractures taking longer to heal due to being Coeliac? Still experiencing pain in my foot, 3 months after the initial pain. 

Apologies for all the questions, still finding my feet, and my doctor didn't give me much to go off! I'd appreciate anything you can tell me and thanks in advance

Warm regards, 

Eve

[trents]

Definitely do not share a toaster with other household members who are still using it for gluten containing bread or other foods! Toasters are probably the worst source of gluten cross contamination ("CC") in any shared kitchen. You should also not be sharing cast iron cookware with other household members.

Check your medications and supplements for wheat starch which is often used as a filler in pills. Contac the manufacturers if necessary to get answers.

For new celiacs there is a large learning curve concerning how and where gluten is hidden in the food supply, particularly processed foods. After a year or two you will have developed a sixth sense for this. 

Headaches and migraines are a common complication for celiacs. But many times the culprit is not gluten but other food sensitivities that have arisen as an offshoot of celiac disease. The "leaky gut" which goes along with celiac disease allows larger than normal protein fractions from he food we eat to enter the blood stream where they can have a toxic effect on body systems and organs and/or lead to immune system reactions to various foods. You should look up "mast cell syndrome" and "histamine intolerance." 

Are you still using oats? About 10% of celiacs get the same reaction from oat protein as they do gluten and many celiacs cannot tolerate dairy.

Several recent studies have shown that most people who claim to be eating gluten free are actually eating "lower gluten" because of CC.

Also, check the spices and seasonings you use for gluten.

Yes, it is very common for new celiacs to have a honeymoon period when they first start on the gluten free eating adventure and then to have a relapse in symptoms. That's when it becomes very important to double down on cross contamination. As you eliminate gluten from the diet you become more sensitive to it over time.

Edited May 29, 2021 by trents

[Scott Adams]

The average time to recovery for celiacs is about two years, but it seems odd to me that you got better, then worse again. I agree with @trents and you should double check your diet for hidden sources of gluten. In Europe there are more gluten-free products made using wheat starch, so if you include those perhaps exclude them.

Here are some more ideas:

 

[EveT]

3 hours ago, trents said:

Definitely do not share a toaster with other household members who are still using it for gluten containing bread or other foods! Toasters are probably the worst source of gluten cross contamination ("CC") in any shared kitchen. You should also not be sharing cast iron cookware with other household members.

Check your medications and supplements for wheat starch which is often used as a filler in pills. Contac the manufacturers if necessary to get answers.

For new celiacs there is a large learning curve concerning how and where gluten is hidden in the food supply, particularly processed foods. After a year or two you will have developed a sixth sense for this. 

Headaches and migraines are a common complication for celiacs. But many times the culprit is not gluten but other food sensitivities that have arisen as an offshoot of celiac disease. The "leaky gut" which goes along with celiac disease allows larger than normal protein fractions from he food we eat to enter the blood stream where they can have a toxic effect on body systems and organs and/or lead to immune system reactions to various foods. You should look up "mast cell syndrome" and "histamine intolerance." 

Are you still using oats? About 10% of celiacs get the same reaction from oat protein as they do gluten and many celiacs cannot tolerate dairy.

Several recent studies have shown that most people who claim to be eating gluten free are actually eating "lower gluten" because of CC.

Also, check the spices and seasonings you use for gluten.

Yes, it is very common for new celiacs to have a honeymoon period when they first start on the gluten free eating adventure and then to have a relapse in symptoms. That's when it becomes very important to double down on cross contamination. As you eliminate gluten from the diet you become more sensitive to it over time.

Hi Trents, 

Thank you very much for your reply. I hadn't realised the toaster was such an issue, I'd say that is probably the culprit but will definitely explore other potential options. I hadn't thought about oats actually but there may well be a connection, might stop eating them for a while to see if it makes a difference. I must research leaky gut and gut health and hopefully start feeling better soon.

Thank you for taking the time to give me such a detailed reply, its been hard trying to figure this out so I really appreciate your advice. 

[EveT]

8 minutes ago, Scott Adams said:

The average time to recovery for celiacs is about two years, but it seems odd to me that you got better, then worse again. I agree with @trents and you should double check your diet for hidden sources of gluten. In Europe there are more gluten-free products made using wheat starch, so if you include those perhaps exclude them.

Here are some more ideas:

 

Hi Scott, 

Thanks for that article, lots to consider but great to have a starting point - was feeling a little in the dark up to now!

[GodsGal]

Hi Eve,

Another source of gluten that people don't often think about is the cosmetics, lotions, hygiene, medications, and pet food items that many people use on a daily basis. Have you checked them out yet?

[sandbtmytoes]

Check for vitamin deficiencies, especially iron, magnesium, vitamin D and zinc.  Almost four years before finding out I had celiac, I was diagnosed with iron deficiency anemia by the gynecologist. This should have been a clue, as anemia is a symptom of celiac, but since it was the gyno and they see anemia due to hanvey bleeding, it wasn’t investigated. This was found in a CBC, not hemoglobin. I thought I had fibromyalgia or was going crazy, because I could hardly go from the bed to the couch and I never felt rested no matter how much sleep I got. I felt tired in my sleep- sounds funny, but those that have been that tired know what I mean. I had headaches every day, my hands and feet would tingle if I tried to exercise, my skin on my thighs and upper arms was sore to the touch, and I was an emotional wreck. Turns out, I had enough red blood cells but they were too small, not mature (dying too fast). Microcytic anemia. He told me to take Slow Fe otc iron supplement. Changed my life. After three weeks I felt better than I had in years. I was able to start exercising and lost 18 pounds in 9 months, 4 lbs. more than my goal.  Then, two years later I was hit with a terrible stomach virus that lingered eight weeks and the IBS I thought I had that had come and gone over the last ten years was back with a vengeance. But this time, it didn’t go away and got worse and worse until it was daily. Went to my pcp thinking I would get treated for IBS. She gave me IBS meds (which made me violently ill) and tested for several autoimmune diseases. That’s where the celiac showed up. I stopped eating gluten and could tell a world of difference on the first day. 
Then, when I had covid this year, the headaches and nausea wouldn’t stop, I found that magnesium did the trick, and it also stopped my constant lower back pain that I had for years. 
Most celiacs are vitamin deficient due to malabsorption from a damaged gut.  

[Oldturdle]

Wow!  What a story.  Thank you so much for the detailed account you gave of your journey.  May I ask how much, and what form of magnesium you took when you had covid?

[sandbtmytoes]

Hi Oldturdle,

When I had covid,  I took as many 250 mg magnesium tablets as I needed. This was during week two of covid when my other symptoms had subsided, but I was still very weak.  I would get a headache then get so nauseated all day long. It was miserable.  After about 3 days of this and hardly able to sleep, I was at my wits end, and this is really a God story... I was on a committee with a coworker from a different dept that I didn’t really know at all, and we had a virtual meeting scheduled for later in the week. I emailed to let her know that I may not make it to the meeting and why. She emailed me back immediately asking how she could pray for me and told me that she almost lost her stepfather in August to Covid. So I told her the migraines were really bothering me...well... she replied that she had dealt with migraines since her teens and told me exactly the natural blend that she takes to prevent them. One of the ingredients was magnesium. I researched and magnesium is proven to work for headaches and migraines...if you’ve ever heard of eating a banana for a headache, that’s why it works. Bananas are full of magnesium. 

So, the first day I probably took 6 or 7 of the 250 mg tablets. I started with two and it took the edge off. Then a couple of hours later the headache started to get worse so I took two more.  For the next few days I would take a couple any time my head would begin to hurt, and it took three-four days of this for it to completely stop the headaches. Then I took a daily “maintenance” dose of 500 mg for a couple of weeks and sort of forgot about it until I developed costochondritis (inflamed rib cartilidge that can be caused by a respiratory infection) and started taking it again.  Like I said, I’ve also noticed that I haven’t hardly had any lower back pain since all of that, and low and behold, magnesium can help with that as well. It helps with cramps, twitches and tight muscles. 

Bonus for those that struggle with constipation...the main ingredient in laxatives is usually magnesium. 

[GodsGal]

9 hours ago, GodsGal said:

Hi Eve,

Another source of gluten that people don't often think about is the cosmetics, lotions, hygiene, medications, and pet food items that many people use on a daily basis. Have you checked them out yet?

Just to clarify, I meant to say hygiene products. 

[Posterboy]

2 hours ago, sandbtmytoes said:

Hi Oldturdle,

When I had covid,  I took as many 250 mg magnesium tablets as I needed. This was during week two of covid when my other symptoms had subsided, but I was still very weak.  I would get a headache then get so nauseated all day long. It was miserable.  After about 3 days of this and hardly able to sleep, I was at my wits end, and this is really a God story... I was on a committee with a coworker from a different dept that I didn’t really know at all, and we had a virtual meeting scheduled for later in the week. I emailed to let her know that I may not make it to the meeting and why. She emailed me back immediately asking how she could pray for me and told me that she almost lost her stepfather in August to Covid. So I told her the migraines were really bothering me...well... she replied that she had dealt with migraines since her teens and told me exactly the natural blend that she takes to prevent them. One of the ingredients was magnesium. I researched and magnesium is proven to work for headaches and migraines...if you’ve ever heard of eating a banana for a headache, that’s why it works. Bananas are full of magnesium. 

So, the first day I probably took 6 or 7 of the 250 mg tablets. I started with two and it took the edge off. Then a couple of hours later the headache started to get worse so I took two more.  For the next few days I would take a couple any time my head would begin to hurt, and it took three-four days of this for it to completely stop the headaches. Then I took a daily “maintenance” dose of 500 mg for a couple of weeks and sort of forgot about it until I developed costochondritis (inflamed rib cartilidge that can be caused by a respiratory infection) and started taking it again.  Like I said, I’ve also noticed that I haven’t hardly had any lower back pain since all of that, and low and behold, magnesium can help with that as well. It helps with cramps, twitches and tight muscles. 

Bonus for those that struggle with constipation...the main ingredient in laxatives is usually magnesium. 

 

On 5/29/2021 at 9:21 AM, EveT said:

Hi there, 

I'm very new to this Coeliac business so apologies if this has been asked/answered already. As a brief background, I suffered a stress fracture in my foot in February. I was not doing enough exercise to warrant this type of fracture so my doctor ordered blood tests which strongly suggested Coeliac, later confirmed with an endoscopy and biopsy. Following the endoscopy, I went gluten free and within a week I was feeling so much better than I had been, my gastro symptoms started to improve, my headaches had gone away, and I had more energy (still nowhere near normal but was a lot better than previously). However, following this short burst of feeling better, I began to feel worse again, the main symptom being a really horrible, thumping headache/migraine that I used to associate with gluten. I've been very careful with not eating gluten, so I'm wondering if this is normal to still experience symptoms a couple months after you stop eating gluten? I would be grateful if there are any more experienced people with Coeliac out there who could tell me if still experiencing headaches after going gluten free is normal. Does it take a while for your body to be truly free of gluten? Or is sharing a toaster enough to elicit a reaction like this?

As an aside, does anyone have experience of fractures taking longer to heal due to being Coeliac? Still experiencing pain in my foot, 3 months after the initial pain. 

Apologies for all the questions, still finding my feet, and my doctor didn't give me much to go off! I'd appreciate anything you can tell me and thanks in advance

Warm regards, 

Eve

Sandbtmytoes and EveT et Al,

EveT, Sandbtmytoes (hereafter Sand in my Toes) has given you good advice for your migraines.

Magnesium has been shown to help Migraines.

But it is not just Magnesium that will help you.....Taking Benfotiamine or another Fat Soluble B1 can help migraines too....

As well as taking Riboflavin and eliminating dairy in your diet or especially going on a low Tyramine diet.

Here is some research links for you both....

I had meant to get back and respond before  now.....but have been busy with life.

Sand in my Toes, I have been long on Magnesium for a while now....because it helped me when many of fatigue issues.....I am glad others' have found it helpful as well.

Here is some threads that have more information about Magnesium.

You can also search for Magnesium or the Posterboy on Celiac.com and many threads about Magnesium will come up.

EveT and Sand in My Toes (and how many will feel when Low in Magnesium and Thiamine especially) because it activates Thiamine in the Body (in which a deficiency of Thiamine will cause burning feet syndrome) because our nerve ending become inflamed when we get low in Thiamine.....when this has happened you have developed Beri Beri and the doctor's don't know the symptom's any more today!

Again here is the links on Magnesium, Thiamine and Riboflavin for headaches.....and the need to avoid Tyramine (especially Cheeses) and/or Dairy in your diet to treat headaches.

Entitled "Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache"

https://pubmed.ncbi.nlm.nih.gov/29850313/

Entitled "Why all migraine patients should be treated with magnesium"

https://pubmed.ncbi.nlm.nih.gov/22426836/

Entitled "Magnesium in the Central Nervous System subtitled Magnesium in Headaches"

https://www.ncbi.nlm.nih.gov/books/NBK507271/

Entitled "High-dose riboflavin treatment is efficacious in migraine prophylaxis: an open study in a tertiary care centre"

https://pubmed.ncbi.nlm.nih.gov/15257686/

Here is the article on Dairy's possible role in Migraines.....especially Tyramine.

https://www.livestrong.com/article/378971-does-eating-dairy-cause-headaches-fatigue/

Here is the National Headaches Foundations list of how to reduce Tryamine in your diet.

https://headaches.org/wp-content/uploads/2018/02/TyramineDiet.pdf

Essentially eat fresh as foods as possible and stay away from Fermented foods and stay away from aged foods...

Quoting from the Livestrong article

"NHF notes that fresh dairy foods like milk, cottage, ricotta and cream cheese are low in tyramine, whereas yogurt, sour cream and buttermilk have moderate amounts. However, tyramine levels in all foods increase as they age. That means even though fresh dairy foods are lower in tyramine, if they've been in the refrigerator for a while, they'll be higher in the compound and might trigger a headache."

And get plenty of Magnesium I would say......and  take a Fat Soluble Thiamine and a B-Complex all would/should help.

The best forms of Magnesium to take is Citrate (always with meals) and Magnesium Glycinate which can be taken anytime.....but it is more expensive.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[AlwaysLearning]

I have a foot injury that still aches from time to time ... 35 years later. Foot injuries can be like that.

But healing times could be delayed by vitamin deficiencies and vitamin deficiencies can cause headaches. I would be suspicious of a low vitamin D level as it is common, correlates to the malnutrition related to celiac digestion issues, and could mess up other hormones and cause headaches. But there could be lots of other possibilities. If you have not been tested for vitamin and mineral deficiencies, I would do that.

If you have not had your hormone levels tested, I would do that as hormone imbalances and headaches go hand in hand. Thyroid problems are often seen in people who have celiac and an overactive thyroid can drain you of the vitamins and minerals it likes to use as fuel. The thyroid produces hormones that are used to control lots of functions throughout your body, so it running too high or too low can cause all sorts of issues including headache. 

I would not overlook dehydration as a possible cause of headaches. Not major dehydration that would have noticeable symptoms, but more of a chronic dehydration where you're just a little under your ideal levels every day. If you've gone gluten free recently and had to totally change the way you eat, has this also affected what you drink? When I get a headache, my water consumption is the first thing I consider as a possible cause.

If you still can't find a possible cause of your headaches, I would start a food/symptom diary to help you identify food/beverage correlations that are less obvious. 

And don't forget to look for hidden sources of gluten in things like hygiene products, makeup, dental appliances, etc. (Yes, they put gluten in some plastics to make them more flexible.) 

Best of luck to you! I know you can figure it out, even if it takes a while.
 

[trents]

On 5/30/2021 at 5:18 PM, sandbtmytoes said:

Bonus for those that struggle with constipation...the main ingredient in laxatives is usually magnesium. 

Well, I think that is an exaggeration. Mg is the active ingredient in some laxative products but lots of laxatives use other things, either to soften the stool by drawing water into the colon or by providing some kind of irritation that stimulates evacuation.

[Jabreu81]

On 5/29/2021 at 10:21 AM, EveT said:

Hi there, 

I'm very new to this Coeliac business so apologies if this has been asked/answered already. As a brief background, I suffered a stress fracture in my foot in February. I was not doing enough exercise to warrant this type of fracture so my doctor ordered blood tests which strongly suggested Coeliac, later confirmed with an endoscopy and biopsy. Following the endoscopy, I went gluten free and within a week I was feeling so much better than I had been, my gastro symptoms started to improve, my headaches had gone away, and I had more energy (still nowhere near normal but was a lot better than previously). However, following this short burst of feeling better, I began to feel worse again, the main symptom being a really horrible, thumping headache/migraine that I used to associate with gluten. I've been very careful with not eating gluten, so I'm wondering if this is normal to still experience symptoms a couple months after you stop eating gluten? I would be grateful if there are any more experienced people with Coeliac out there who could tell me if still experiencing headaches after going gluten free is normal. Does it take a while for your body to be truly free of gluten? Or is sharing a toaster enough to elicit a reaction like this?

As an aside, does anyone have experience of fractures taking longer to heal due to being Coeliac? Still experiencing pain in my foot, 3 months after the initial pain. 

Apologies for all the questions, still finding my feet, and my doctor didn't give me much to go off! I'd appreciate anything you can tell me and thanks in advance

Warm regards, 

Eve

Sharing a toaster will most definitely cause serious reactions. My doctor told me that just one gluten crumb getting on my food will cause an extra six months of intestinal damage which them causes a domino effect in the immune system. I had a tear in my adductor tendon and it took way longer for me to heal than the average person. This injury happened around the time of my diagnosis so all my symptoms were heightened. My physical therapist did say that I took longer to heal but stick to physical therapy and eventually it will get better. Gluten reactions are very hard on the body. Try some anti inflammatory natural supplements like Zyflamend or turmeric.

[EveT]

Hi everyone, 

Thank you so much for all your feedback, it is really reassuring and comforting to hear from people who have experienced the same thing. You have given me a lot to think about and I will definitely look in to vitamins and minerals, and be more careful about cross contamination and cosmetics. 

Thanks for all your advice, I really appreciate it  

Eve