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Looking Pretty Bad


The One

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The One Apprentice

I want to know if anyone else has this problem, when I was still throwing up from gluten as I didn't know it was what was making me sick I would get face rashes, they wouldn't be itchy though (as DH tends to be), but they would stay for quite a few hours and then go away (though never went away completely) every time I would throw up it would get worse and after I stopped eating gluten every time I would get glutened the rash would come back, it would usually be around the nose as if i were blushed and on the cheek next to the ear (left) i also had really bad circles under my eyes and very puffy. You can always still see some of the rash on my face and the circles under the eyes are definitely not gone at all, sometimes I look at myself and I really don't recognize myself from what I looked like before (and before i lost about 20lbs) I still feel like I look pretty bad, could something else be causing me to look like this? maybe milk? has anyone had such a problem? or possibly it could be vitamin related?

Thanks,

AJ


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missy'smom Collaborator

If it was caused by dairy that would mean that you have an allergy not lactose intolerance. I have an allergy and don't get a rash but get one or two small to large sores on my face if I drink milk or cream or if my cumulative intake of dairy is too much. This particular symptom is more delayed and I do have other reactions too, but everyone's different.

If I don't get enough rest or skip a dose of vitamins my under-eye area can be quite pufy in the am an I get dark circles. Being a little underweight doesn't help either.

I hope you're feeling better soon. Take Care.

The One Apprentice

That's interesting, now that I remember, the first time I got the rash it was a spot [about the size of a penny] on my left cheeck after throwing up and what i had ate was gluten free instant mash potatoes [made with regular milk] and an egg. So it wasn't the gluten making me throw up in that one instance. So what would be the difference between dairy allergy and lactose intolerance? does that mean that lactose free milk could give me a reaction too?

I will definitely try to get a vitamin level testing next time i'm at the doctors, so far i've been unsuccessful in trying to get tested because they don't believe me I have celiac.

thanks for your input,

AJ

Ursa Major Collaborator

It looks like you may have a casein intolerance (not allergy), which is similar to a gluten intolerance and is mediated by the immune system as well. Meaning that you should try eliminating all dairy (including cheese, yogourt, butter, whey as well as milk).

If it was just a lactose intolerance you would be fine using lactaid pills or drinking lactaid milk. It appears that you are not fine using those.

Dairy is also well known to be causing rashes and eczema. My oldest granddaughter was covered in eczema from head to toe for the first 1 1/2 years of her life, until my daughter stopped giving her dairy. Within weeks she had beautiful, clear skin (still does at the age of 7 now). When my daughter made the family gluten-free, the dark circles under her eyes finally disappeared as well.

Soy could also be causing those same problems.

Susie, my youngest daughter, will also throw up from dairy (she is also gluten intolerant).

The One Apprentice

I will try that and see if it improves, does the rash have to be itchy? because mine doesn't itch it just gets more noticeable certain days more than others. I did switch to lactose free milk and it doesn't upset my stomach but the rash is still there so it makes sense that it could be casein.

Do you know of any substitutes to dairy products or do I have to completely eliminate them? i looove cheese and i always use milk and butter for mash potatoes and such, what else could i use?

thanks,

AJ

missy'smom Collaborator
That's interesting, now that I remember, the first time I got the rash it was a spot [about the size of a penny] on my left cheeck after throwing up and what i had ate was gluten free instant mash potatoes [made with regular milk] and an egg. So it wasn't the gluten making me throw up in that one instance. So what would be the difference between dairy allergy and lactose intolerance? does that mean that lactose free milk could give me a reaction too?

Open Original Shared Link

That penny size sore sounds like ones I've gotten. Here is a link that explains the difference between lactose intolerance and milk allergy.

I used to think that I could get away with some dairy but now that I've eliminated it completely my constant nasal stuffiness has gone and I notice a diference in my BM's if I eat even a little bit of butter. I used to use lactaid milk seemingly without problem(but not lactaid pills and cream), but my mother was told that I had a milk allergy as a baby and my symptoms fit one of the allergy profiles on that link. Hope it helps.

Ursa Major Collaborator

You could use coconut oil (cold pressed, non-hydrogenated, which is extremely healthy) and rice milk (not rice dream, it isn't gluten-free) in your mashed potatoes. I always do, and nobody knows the difference (only my tummy does ;) ).

No, the rash doesn't have to be itchy. DH is always itchy, so that just means it isn't that.


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MyMississippi Enthusiast

You might have rosacea (don't think I spelled that right ) :)

I had red cheeks, chin, and nose that would come and go for years. And then the redness got better, but never went away completely. Then I noticed this red little patch on the end of my nose that came and went for years. Finally went to dermatologist because I thought it might be a skin cancer. Turned out to be rosacea. I was floored ! Even though I'm a nurse, it never occured to me that I had rosacea, (I guess I had just gotten used to my rosey face). :D

If I were you , I would see a dermatologist.

TheRockShow182 Newbie

I've found that I was allergic to milk (I think it's the whey in milk more than the lactose), corn and gluten. I first eliminated gluten but didn't start to feel completely better until I eliminated the other two things. The trouble for me is that corn is in almost everything and I have just gotten over being sick after consiming food I did not know contained ingredients i was allergic to. It all happened so slowly it was hard to tell I was having an allergic reaction but the build up of toxic food has destroyed all my hard work I've put towards repairing my body.

I think you may have other allergies so I would maybe try eliminating some other foods and see where that takes you.

The One Apprentice

I'll probably have to end up buying two different milks, my husband is weird about his food and he even looks at it weird when i buy lactose free milk, maybe if i make him trying without knowing he will eat it ;]

You're right Mississippi, it could be rosacea, never thought of it even though i've heard of it. The rash looks exactly like the butterfly rash from Lupus, but I have tested negative for lupus, I will definitely have to see a dermatologist and also try to get tested for other allergies or just do elimination because I can't keep being this way, anxiety doesn't help though.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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