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

Bummed Out :(- Just Venting

tryme

By tryme
in Coping with Celiac Disease

Recommended Posts

tryme Rookie
tryme
Posted

Saw my GI today for follow up and found out that I might still be glutening myself :(  I thought I was doing great with my new gluten free diet and didn't even think of the skin care products that I was using ;(   My moisturiser contains GLUTEN!! I thought that it wasn't possible for gluten to be absorbed in the blood stream through the skin but my GI specialist thinks otherwise. I guess that is another newbie mistake for me. I just feel frustrated because I thought I was doing good but I guess this means I have to start from day 1 again :(   But  I don't know how this is possible because my GI symptoms (well symptoM  as I just had the Big C) have disappeared and I don't have skin sensitivity to gluten.    

 

Also my calcium is slightly high not sure if it is secondary to taking supplements but my doc is sending me to for bone scan. Do I need to be worried about this?

 

I just feel so disappointed in myself but looking at the bright side I am happy that this was made clear to me during initial stages of my diet and not towards the end or else I would have been really pissed :P

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Saw my GI today for follow up and found out that I might still be glutening myself :(  I thought I was doing great with my new gluten free diet and didn't even think of the skin care products that I was using ;(   My moisturiser contains GLUTEN!! I thought that it wasn't possible for gluten to be absorbed in the blood stream through the skin but my GI specialist thinks otherwise. I guess that is another newbie mistake for me. I just feel frustrated because I thought I was doing good but I guess this means I have to start from day 1 again :(   But  I don't know how this is possible because my GI symptoms (well symptoM  as I just had the Big C) have disappeared and I don't have skin sensitivity to gluten.    

 

Also my calcium is slightly high not sure if it is secondary to taking supplements but my doc is sending me to for bone scan. Do I need to be worried about this?

 

I just feel so disappointed in myself but looking at the bright side I am happy that this was made clear to me during initial stages of my diet and not towards the end or else I would have been really pissed :P

 

 

Well, hon,  it isn't possible for gluten to be absorbed through the skin. The gluten molecule is too large.

 

(make sure your "GI specialist" knows this.)

 

Please, read this:

 

Open Original Shared Link

 

 

No need to worry about a bone scan. It's painless and over in a second (you lay on a table--that's  it)

 

Calcium being high is less worrisome than calcium being low. If you are newly diagnosed, all of your levels may very well normalize soon anyway. Just give the G F diet some time.

 

I am sure you are doing everything right. No, you do not have to start from "day 1" again.

 

If your Big C has disappeared, you are doing fine. 

 

Why on earth did he say you were "glutening yourself?"  This is confusing.

GF Lover Rising Star
GF Lover
Posted

Sorry for your set back.  Are you sure that the lotion was the problem?  Unless you were licking it off your fingers or something, its not likely the cause.  Are your supplement/medications gluten free?  Do you have a shared kitchen?  I would look at some other possibilities.  Also, I don't know how long you have been diagnosed but it does take time to heal.

 

Good luck to you.

 

Colleen

shadowicewolf Proficient
shadowicewolf
Posted

I agree with the others. Gluten cannot be absorbed through the skin.

Gemini Experienced
Gemini
Posted

Well, hon,  it isn't possible for gluten to be absorbed through the skin. The gluten molecule is too large.

 

(make sure your "GI specialist" knows this.)

 

Please, read this:

 

Open Original Shared Link

 

 

No need to worry about a bone scan. It's painless and over in a second (you lay on a table--that's  it)

 

Calcium being high is less worrisome than calcium being low. If you are newly diagnosed, all of your levels may very well normalize soon anyway. Just give the G F diet some time.

 

I am sure you are doing everything right. No, you do not have to start from "day 1" again.

 

If your Big C has disappeared, you are doing fine. 

 

Why on earth did he say you were "glutening yourself?"  This is confusing.

I second all this advice. The only thing regarding skin care that needs to be gluten-free would be hand lotion because if you slather that on and then eat a sandwich, you could be ingesting some which would cause an actual gluten hit.....not the fake kind like the notion that gluten is absorbed through the skin.  Good grief!  This man is a doctor with bad medical advice like that?  :blink:  

 

I will also mention that anything that goes on your lips is another "must be gluten-free" item, for obvious reasons.  It has to make it's way into your mouth, no matter what the offending item is before you need to worry.  Or up your nose or in your eyes but I highly doubt you will do that with your make-up/skincare items!  :o  

 

If your symptoms are resolving, then pat yourself on the back that you are doing a good job and don't worry about skin care/ make-up items unless you plan on eating them....no matter what this specialist says.  Their information is incorrect.

tryme Rookie
tryme
Posted
  • Author

Thanks everyone! I was diagnosed at the beginning of this month. 

 

Food wise I am doing ok..well I had almonds and walnuts from kirkland which I later found out were processed in same facility that might have wheat <_< All my supplements are dairy & gluten free. My iron came up to be 127  :rolleyes: Its just the calcium that has me worried. I just do not want to have hyperthyroidism  :( My vitamin D is really low. Although I am not as anxious about the bone density exam now that I know its not something intrusive.

my husband has also gone gluten free with me and he eats outside if he is craving some wheat and makes sure he wash his hands and brush his teeth if he does consume gluten. Its just I was darn sure that gluten cannot be absorbed but hearing it from the specialist made me worried. well he said " you are working so hard on your diet just make sure you don't use products with gluten as it can be absorbed through your skin" But it is reassuring that it can't be absorbed through skin . I think I will use this one until it finishes and maybe buy the gluten free one next time just to be extra sure that I am healing.

 

Thanks everyone!

tryme Rookie
tryme
Posted
  • Author

Thanks Gemini! I do take extra care with my lip balms and hand lotions. I also always wash my hands before touching my food just to be extra sure and mostly consume foods for which I need cutlery. I am trying my best to avoid any cross contamination!  

 

you guys are right, I shouldn't worry myself with this. Just because its coming from a specialist doesn't always mean that the information is correct!

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

Celiac.com Sponsor (A8-M):


Pegleg84 Collaborator
Pegleg84
Posted

Some people choose to only use gluten-free skin/hair care products (I do), but it's mostly a "better safe than sorry" measure. It can't be absorbed by the skin, but if it gets in your mouth, that could cause problems. I was (obliviously, cause I'm an idiot and didn't read the label properly) using a shampoo with wheat protein in it for over a year. Definitely wouldn't say it glutened me, but I could swear I felt the teensiest bit better after switching, but I'm pretty sensitive. So, it is possible that your moisturizer could have been glutening you, but only through your mouth, not skin.

 

In any case, it could be something else causing CC, or could be that you just haven had long enough to heal completely. When were you diagnosed? Good to hear all your vitamins are going up. I'd kill for 100+ iron levels!

Really, sounds like you're feeling better and getting better. So tell your doctor next time that he's been misinformed on the skin absorption thing, and keep on learning and healing.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

If you're still concerned about going Gluten-free with topical products, sensitive-skin Curel is Gluten-free - and I have found that it actually works really well (was using it for years before I even knew I had a gluten problem).  Also, most Bare Minerials makeup is gluten-free, as is most Banana Boat sun screen.  Check their websites for a list of specific varieties.

BelleVie Enthusiast
BelleVie
Posted

I have to second Gemini. If you put lotion on your hands and then just rub it all over your face getting it on your lips, that could gluten you. The same thing happened to me. I'd wake up feeling great, get ready for work, and by the time I got there I'd start feeling the gluten sleepies and get a headache. After a couple weeks, I realized the problem and I changed my lotion!  

michaelyejo Newbie
michaelyejo
Posted

No I understand. I cant even touch it. When I bake cookies for my family that contain wheat my hands swell & became rashed as well as red. Maybe some peoples sensitivities are worse then others.Its goofy but when the holidays come around I buy disposable gloves for that purpose. I also don't use any Aussie conditioner. That contains wheat. It took me two weeks of a flaky itchy scalp to realize that maybe I should look at the label.  <_<

kareng Grand Master
kareng
Posted

No I understand. I cant even touch it. When I bake cookies for my family that contain wheat my hands swell & became rashed as well as red. Maybe some peoples sensitivities are worse then others.Its goofy but when the holidays come around I buy disposable gloves for that purpose. I also don't use any Aussie conditioner. That contains wheat. It took me two weeks of a flaky itchy scalp to realize that maybe I should look at the label.  <_<

Sounds like a contact allergy to me.

shadowicewolf Proficient
shadowicewolf
Posted

Sounds like a contact allergy to me.

Very much so...

GF Lover Rising Star
GF Lover
Posted

No I understand. I cant even touch it. When I bake cookies for my family that contain wheat my hands swell & became rashed as well as red. Maybe some peoples sensitivities are worse then others.Its goofy but when the holidays come around I buy disposable gloves for that purpose. I also don't use any Aussie conditioner. That contains wheat. It took me two weeks of a flaky itchy scalp to realize that maybe I should look at the label.  <_<

Yup.  You have a separate allergy issue.  Touching gluten is not an issues for those without an allergy to wheat.  As you know Celiac is an AI Disease, not an allergy. 

 

When you said your Doctor told you that you were getting gluten from your lotion, was he talking about your allergic reaction?  Then he would not be an idiot.  Are you Diagnosed Celiac?  Or do you have a wheat allergy.  They are two very different things. 

 

Colleen

 

Colleen

frieze Community Regular
frieze
Posted

Yup.  You have a separate allergy issue.  Touching gluten is not an issues for those without an allergy to wheat.  As you know Celiac is an AI Disease, not an allergy. 

 

When you said your Doctor told you that you were getting gluten from your lotion, was he talking about your allergic reaction?  Then he would not be an idiot.  Are you Diagnosed Celiac?  Or do you have a wheat allergy.  They are two very different things. 

 

Colleen

 

Colleen

...or maybe both?

GF Lover Rising Star
GF Lover
Posted

...or maybe both?

 

Yes, absolutely possible...

 

Colleen

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.