JCH13's Blog

Is it possible she’s getting cross-contamination, which usually happens if you eat out, or that she could been cheating on her diet?

The headaches could be triggered by something in her diet besides gluten. Over time, celiacs commonly develop allergies/intolerances to other foods besides those containing gluten. This is because of damage to the mucosal lining of the small bowel which allows larger than normal protein fractions to cross into the blood stream. We call this "leaky gut syndrome."

Do the headaches happen after every meal?

Are the headaches migraine class?

Have you noticed any patterns with the headaches in regard to certain meals or foods your daughter is eating?

Does she generally eat the same things for say, breakfast or lunch? Keep in mind that allergic reactions can happen up to a day from the time the allergen was consumed. It would be good to keep a food diary until you discover potential triggers to avoid.

I might suggest you try a bland, simple diet centered around fresh meat and vegetables. Have her try a "low histamine" diet. You can look that up for more particulars but it would include avoiding things that are canned, pickled or aged/fermented. Many fruits and especially dried ones are typically high in histamines. I am a migraine suffer so I am speaking from some experience. "Fresh" is a key word here because essentially all foods increase in histamine content over time.

Has your daughter started taking any new vitamins/supplements/meds are started using shampoo or other topical beauty aids that might contain gluten? Some people are are really gluten sensitive and can get reactions transdermally.

Histamine as Trent's mentioned also popped in my head as a possibility. Trent's gave excellent details. 

Do not get overwhelmed initially with the inconsistency you may discover online for histamine lists. One can find differences regarding histamine lists. Most have to identify their particular triggers. As Trent's mentioned fermentation, old, overly ripe, aged etc is the avoid that is the initial start.

Good luck

On 1/11/2021 at 12:22 AM, trents said:

The headaches could be triggered by something in her diet besides gluten. Over time, celiacs commonly develop allergies/intolerances to other foods besides those containing gluten. This is because of damage to the mucosal lining of the small bowel which allows larger than normal protein fractions to cross into the blood stream. We call this "leaky gut syndrome."

Do the headaches happen after every meal?

Are the headaches migraine class?

Have you noticed any patterns with the headaches in regard to certain meals or foods your daughter is eating?

Does she generally eat the same things for say, breakfast or lunch? Keep in mind that allergic reactions can happen up to a day from the time the allergen was consumed. It would be good to keep a food diary until you discover potential triggers to avoid.

I might suggest you try a bland, simple diet centered around fresh meat and vegetables. Have her try a "low histamine" diet. You can look that up for more particulars but it would include avoiding things that are canned, pickled or aged/fermented. Many fruits and especially dried ones are typically high in histamines. I am a migraine suffer so I am speaking from some experience. "Fresh" is a key word here because essentially all foods increase in histamine content over time.

Has your daughter started taking any new vitamins/supplements/meds are started using shampoo or other topical beauty aids that might contain gluten? Some people are are really gluten sensitive and can get reactions transdermally.

I agree. I have a bunch of auto immune diseases, (including Celiac and Type 1 Diabetes and Hashimotos and Reynauds and Sjogrens and NLD...) and recently learned I also have a mast cell activation syndrome with gi presentation. The mast cell episodes are usually triggered by histamines. The histamines in red wine, tomatoes and aged/jarred foods like roasted red peppers etc as well as dried fruits  would be triggers for my symptoms. Often symptoms from histamines would turn up between 3 and 4 am when histamine levels naturally rise during the night. ANYWAY, now that I am taking an antihistamine and some other mast cell stabilizing meds and avoiding the food triggers/(histamine rich food and drink) I am doing much better with these 4 am g.i. disasters. All this to say that you may want to take a look at histamine rich foods and see if they are symptom triggers. I had thought these symptoms I was having were because I was getting gluten-poisoned, but in fact my antibodies were perfect (b/c I am gluten-free!) despite ongoing episodes. It took months to figure out, but I am much healthier now that I avoid histamines. Hope you can figure out some triggers! 

I would suspect that histamine levels could be high as well. Your body produces its own histamines but you can also get them from food. The way histamines work is that your levels can build and build but you won't have any symptoms until they hit a critical level, at which point, symptoms appear. Those can be anything from breaking out in hives to getting a little sneezy. A headache could be a result of sinuses getting plugged up with more liquid. If my histamine levels are already on the high side, I can expect to have my sinuses fill and to start sneezing after pretty much any meal, no matter what I'm eating because most foods contain some histamines. If you experiment with a low histamine diet and find that it helps, then I would also get thyroid levels checked next time you have an annual checkup. High histamine levels can be an indication that your body is regularly overproducing them which can be associated with hyperthyroidism.

The other thing to note is that the longer you have been gluten free, the more sensitive you can become to those tiny, parts per million of gluten in food. Even foods that are labeled as gluten free might still contain trace amounts so be careful with any foods that are processed. Headaches are one of the symptoms that make me question if I've been glutened.

In addition to shampoos, lotions, and soaps, we women also need to replace all of our makeup with gluten free. Mascara is particularly high in gluten. Even if you didn't have reactions to makeup before going gluten free, you might start after because your reactions become stronger.

All of that said, one of the most common causes of headaches is dehydration. Adding more water (not other beverages) could help not only in avoiding dehydration, but helping the body cope with excess histamines or even to recover from those little micro-glutenings we all deal with no matter how gluten free we try to be.
 

I feel sorry for your daughter!  Every new symptom needs to be documented, either by you or your daughter. When you have celiac disease for as long as I have, you find all sorts of rashes and headaches and abdominal pains that you never had before.  We are not doctors, and neither are you, but it would help your daughter if you could read up on celiac disease as much as possible.  Unfortunately, it is a connective tissue disease, which as such can mimic other connective tissue diseases.  I would ask you if you have tried any milk other than dairy, like coconut milk or some of the other great milks they have now... just to see if she has an allergy to dairy.  This is only a possibility, but worth trying since you have to pay to see a specialist.  Scott Adams, our Editor has so much research on file regarding celiac disease and its favorite connective tissue disease. You will read up about dairy allergies, and also about thyroid disease, because these two seem to "pop" up time and time again with celiac disease.  There are so many things to cause headaches, such as needing glasses.  Of course then you say,  "But she only has headaches when she eats". Can you possibly keep a diary as to what she has eaten that day...in order to eliminate other foods she may be allergic to.  So many questions;- "Has she been sleeping on a different pillow, like a feather pillow, have you bought a new family pet, especially a cat with the dander from its fur. Is there a trigger point when the headaches strike.  I get headaches when I have been glutened, but I have had celiac disease for so long I can almost tell what has attacked me, or made me go on the hunt for the culprit.  If you have medical coverage it might be worth while getting a referral naturopath or a specialist. Many people who have celiac disease also find they are allergic to cows milk and even cheese.  You could go on line to the University of Chicago, Celiac Disease Centre and ask one of the research team there if they have some suggestions. Sadly, they have restricted joining their newsletter to the medical facility, and even checked my background prior to admitting me. If you know someone who is a nurse, you could possibly get them to help you, or last choice, go on the internet and ask the question.  They come up with lots of suggestions, but primarily they will mention dairy allergy right along with dust mites and the Spring allergy season we are in right now.