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

My First Post!

Lilla

Recommended Posts

Lilla Newbie
Lilla
Posted

Hi!

I've been lurking for a few weeks now, so thought I'd make it "official" and actually post something! My story is quite long and resembles many that I have read here. After many years of difficulty, I have begun to suspect that gluten is the culprit. Had blood test last week and am anxiously waiting for the results. In the meantime, I have a question. On my back (especially my shoulders), I have legions of these small, white spots (imagine a "reverse freckle"). They do appear to be slightly raised. I noticed them about a year a half ago. I waited to go to the doctor, as they don't itch. However, they aren't very attractive. I did go to the doctor about 2 weeks ago, as it seems that I am just getting more and more of them...now, also on my front as well. The doctor had no idea of what they were. After consulting with a nurse, the two of them decided that it was some variant of acne. I don't know about that...just a gut-feeling. I have been treating it, as they suggested, with acne medication. Well, everything else on my back is starting to clear up, but not the white spots! :lol:

Could this skin condition be caused by a food intolerance? If it doesn't start to improve in another 2 weeks, I'll go back and ask for a second opinion. As many of you know, dealing with doctors can be so frustrating! Thanks for reading this!

Karen in Sweden

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

Celiac.com Sponsor (A8-M):


taz sharratt Enthusiast
taz sharratt
Posted
Hi!

I've been lurking for a few weeks now, so thought I'd make it "official" and actually post something! My story is quite long and resembles many that I have read here. After many years of difficulty, I have begun to suspect that gluten is the culprit. Had blood test last week and am anxiously waiting for the results. In the meantime, I have a question. On my back (especially my shoulders), I have legions of these small, white spots (imagine a "reverse freckle"). They do appear to be slightly raised. I noticed them about a year a half ago. I waited to go to the doctor, as they don't itch. However, they aren't very attractive. I did go to the doctor about 2 weeks ago, as it seems that I am just getting more and more of them...now, also on my front as well. The doctor had no idea of what they were. After consulting with a nurse, the two of them decided that it was some variant of acne. I don't know about that...just a gut-feeling. I have been treating it, as they suggested, with acne medication. Well, everything else on my back is starting to clear up, but not the white spots! :lol:

Could this skin condition be caused by a food intolerance? If it doesn't start to improve in another 2 weeks, I'll go back and ask for a second opinion. As many of you know, dealing with doctors can be so frustrating! Thanks for reading this!

Karen in Sweden

dont really know about this one hunny, but it ouldnt supprise me if gluten was the culprit. welcome to the board! you will find the answer here as there are lots of knoweladgable people here who know an awfull lot about gluten related things. good luck!!!

Lilla Newbie
Lilla
Posted
  • Author
dont really know about this one hunny, but it ouldnt supprise me if gluten was the culprit. welcome to the board! you will find the answer here as there are lots of knoweladgable people here who know an awfull lot about gluten related things. good luck!!!

Thanks for the welcome and the reply! :)

CarlaB Enthusiast
CarlaB
Posted

Welcome to the board! I don't know about the white spots, but I have the "reverse freckles" and regular ones, too.

Guest nini
Guest nini
Posted

before my dx I had all these really weird little bumps all over my shoulders, chest and even my face. Sometimes they were red and puffy but most of the time they were raise white bumps. Sometimes they itched and sometimes they didn't. The dr.s didn't ever figure out WHAT they were but they did dissapear after I went gluten-free.

Lilla Newbie
Lilla
Posted
  • Author

Thanks to everyone! I don't know why I didn't buy their dx of "acne" (maybe because it felt like they kind of just "guessed" what it was and then dismissed me as quickly as they possibly could). I plan to go gluten free as soon as the results from my tests are--no matter what the result says. My body feels better without it, and that is pretty much good enough for me. Thanks again!

Karen

Han-Jam Newbie
Han-Jam
Posted

Hi Lilla,

I found your post a a result that goggle posted after I serached for 'raised small white bumps on shoulders' as this is something that I have had for a couple of weeks now.

I'm celiac and have been diagnosed for 2 and a half years. I've to date been very good with maintianing a gluten free diet and have long since stopped missing many wheat based foods (cakes, bread, pizza - you know the score!)

But I've been quite depressed lately and have thought that indulging in the odd cake or piece of buttery toast would cheer me up, and too depressed to care what it would do to my health. But I'm guessing that as well as causing the bad stomach cramps and lethargy I used to suffer before diagnosis the re introuduction of gluten has also casued these white bumps. I've just started on a complete de-tox and am back gluten free (forever). My advice is to try the same and see if they clear up.

Good luck

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Welcome to the board!

Depression is often a symptom of the disease. I take St. John's Wort for it, and there are others here who take other things -- drugs and/or herbs. St. John's works well for me, but if you're taking other meds you need to see if it will work with them.

Staying off gluten is necessary, too! :P There are pretty good gluten-free alternatives to your buttery toast -- I like Kinnikinnick, they even have great donuts!

I'm glad your search led you here, you'll fine a lot of good info here.

angel-jd1 Community Regular
angel-jd1
Posted
Hi Lilla,

I found your post a a result that goggle posted after I serached for 'raised small white bumps on shoulders' as this is something that I have had for a couple of weeks now.

I'm celiac and have been diagnosed for 2 and a half years. I've to date been very good with maintianing a gluten free diet and have long since stopped missing many wheat based foods (cakes, bread, pizza - you know the score!)

But I've been quite depressed lately and have thought that indulging in the odd cake or piece of buttery toast would cheer me up, and too depressed to care what it would do to my health. But I'm guessing that as well as causing the bad stomach cramps and lethargy I used to suffer before diagnosis the re introuduction of gluten has also casued these white bumps. I've just started on a complete de-tox and am back gluten free (forever). My advice is to try the same and see if they clear up.

Good luck

Sounds like today was your lucky day. I hope that you stick around the board. This group is full of supportive folks who can offer advice, a shoulder to lean on, and ears to listen with. Sometimes it is hard, but with support it seems slightly easier.

I'm glad you have decided to stay away from gluten. You have figured out that it can trigger more than an upset tummy.

Come here and post often. We would be happy to have you.

-Jessica :rolleyes:

lonewolf Collaborator
lonewolf
Posted
I've to date been very good with maintianing a gluten free diet and have long since stopped missing many wheat based foods (cakes, bread, pizza - you know the score!)

But I've been quite depressed lately and have thought that indulging in the odd cake or piece of buttery toast would cheer me up, and too depressed to care what it would do to my health.

Hello and welcome to the board Han Jam. Sorry to chop your post up, but wanted to point out a few things.

You don't have to miss cake, bread or pizza. You can have more than the "odd cake or piece of buttery toast". My avatar is a picture of a gluten-free pizza that I made from scratch - and it wasn't hard and tasted great! It's easy to make gluten-free cakes from mixes or scratch. There are good breads available. I just had 2 pieces of buttery toast yesterday!

Look in the recipe section on this site or do a quick search for recipes - you'll find a lot! Or ask us and we'll help you find what you need.

Lilla Newbie
Lilla
Posted
  • Author
Hi Lilla,

I found your post a a result that goggle posted after I serached for 'raised small white bumps on shoulders' as this is something that I have had for a couple of weeks now.

I'm celiac and have been diagnosed for 2 and a half years. I've to date been very good with maintianing a gluten free diet and have long since stopped missing many wheat based foods (cakes, bread, pizza - you know the score!)

But I've been quite depressed lately and have thought that indulging in the odd cake or piece of buttery toast would cheer me up, and too depressed to care what it would do to my health. But I'm guessing that as well as causing the bad stomach cramps and lethargy I used to suffer before diagnosis the re introuduction of gluten has also casued these white bumps. I've just started on a complete de-tox and am back gluten free (forever). My advice is to try the same and see if they clear up.

Good luck

Thanks so much for replying. Reading your post makes me feel a bit less lost. I was reasonably sure that the white bump thingies had something to do with gluten, but had no real evidence. I just recently found out that gluten may be the culprit which would explain a myriad of symptoms I've been having the past few years, and only went for the testing a week and a half ago. Hopefully, I'll get the results soon and be able to start the gluten free diet. Good luck to you!

lonewolf Collaborator
lonewolf
Posted

Welcome to the board Lilla! Sorry to ignore you on my last post. I'm sure you'll like it here - people are very helpful and caring.

I hope you figure out the white bumps. I have problems with my skin and I know how frustrating it can be.

rinne Apprentice
rinne
Posted

Welcome Lilla and Han Jam, this place is great for making connections as you have just discovered. :)

Lilla, I hope you will check out some past threads, there is lots of information here on testing for Celiac and the real problems of getting an accurate diagnosis. A gluten free diet is a diagnostic tool and it is one you have control over.

Lilla Newbie
Lilla
Posted
  • Author
Welcome to the board Lilla! Sorry to ignore you on my last post. I'm sure you'll like it here - people are very helpful and caring.

I hope you figure out the white bumps. I have problems with my skin and I know how frustrating it can be.

Thanks for the welcome! It's nice to be here!

Welcome Lilla and Han Jam, this place is great for making connections as you have just discovered. :)

Lilla, I hope you will check out some past threads, there is lots of information here on testing for Celiac and the real problems of getting an accurate diagnosis. A gluten free diet is a diagnostic tool and it is one you have control over.

Thanks for the welcome. There certainly is tons and tons of helpful information here. I do plan on going gluten free no matter what the results of the blood test say. My body seems to seriously dislike gluten and that's good enough for me. The positive thing with having an "actual" diagnosis here (I live in Sweden) is that I will be given a certain amount of money each year to help pay for the extra cost of a gluten free diet.

Han-Jam Newbie
Han-Jam
Posted

[Thanks for the lovely welcome and the support. There are so many great threads to check out , a whole load of advice. I'm based in the UK so so of the brands you mention aren't available, but I bought some glten free lasagne sheets last night so will be baking tonight to enjoy my first lasagne in 2 and half years as I've worked out a great way of making bechemel without flour too!

jenvan Collaborator
jenvan
Posted

Some more ideas:

Is Vitilgo a possibility? Vitilgo is not "bumpy" though, so if the spots really are, then its probably not. Fungal infection? How about clogged pores? Those little bumpy, pimply type spots (can be white/red) usually appear on back of arms, legs, butt. Can be helped with an exfoliating lotion with ie, a high lactic acid content. Or maybe Milia? Read about here: Open Original Shared Link

rinne Apprentice
rinne
Posted
Thanks for the welcome. There certainly is tons and tons of helpful information here. I do plan on going gluten free no matter what the results of the blood test say. My body seems to seriously dislike gluten and that's good enough for me. The positive thing with having an "actual" diagnosis here (I live in Sweden) is that I will be given a certain amount of money each year to help pay for the extra cost of a gluten free diet.

That's great, I feel the same way. My bloodwork was negative but I hadn't been eating gluten and I am waiting to have an endoscopy and colonoscopy which I don't think will show the Celiac but I am hoping will rule out other problems. I have known for years I don't digest bread and avoided it but now that I understand about gluten and have gone gluten free I am slowly getting better. I don't need an official diagnosis and here in Canada there aren't any perks like Sweden.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.