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Facial Swellings Revisited


Indigo - Brighton -UK

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Indigo - Brighton -UK Newbie

I wanted to post in case any one else has similar symptoms. I have facial swellings which have improved slowly with a low gluten and then coeliac diet. After finding about iodine and DH on this website I stopped using my sea water nose spray and after this the swellings cleared up completely.

I am now 90% sure they are an unusual variation or pehaps unknown version of DH.

I have also received a diagnosis of gilberts syndrome when my bilirubin levels were high during a period of bad asthma combined with sweats and aches. I am seriously wondering if this was triggered by a visit into my local bakery.

I have changed my asthma medication to a montelukast - which certainly improves my breathing and rhinitus although I am worried about side effects mainly as I suffer from thes a lot but also because it has lactose in it. (when will drug companies learn? I intend to write to them when I get a chance)

I feel like I now have a much better picture of my health and although I have been unable to get a coeliac diagnosis I am sure I am coeliac (like my sister) and that there are other family members with gilberts syndrome and the problems linked to it.

  • 1 month later...

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r0ckah0l1c Apprentice

I think I might know what you are talking about? I consumed chocolate flavored carnation instant breakfast before realizing that it was the only flavor NOT gluten free and later that night noticed several quarter sized red/purple swelling spots along my jawline and was completely freaked out. I noticed it happening yet again about a week later after taking a bite of my friend's slim jim. Is that what happens to you?

  • 4 weeks later...
glutenfreejenny Apprentice

My neck looks swollen. Could that be from celiac disease?? Is that what you're talking about?

ravenwoodglass Mentor
My neck looks swollen. Could that be from celiac disease?? Is that what you're talking about?

Have you had this checked out by your doctor? Swelling in the neck areas could be from a number of things some of which could be gluten related. It should be evaluated by your physician to be on the safe side.

  • 5 weeks later...
DDD Newbie

I know exactly what you are talking about. When I eat gluten or dairy or aspertame, one of the side effects are painful bumps along my jawline. It looks like a pimple, but it's not. I think it's just my body releasing the toxins of what I ate. My aunt gets them too. It looks and feels awful and it's definitely a side effect of gluten for me.

I bet people who suffer from acne would benefit from going gluten free. If only omitting food from your diet was as profitable as harmful drugs :(

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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