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

Does Anyone Of This Sound Familiar?


veryconfused

Recommended Posts

veryconfused Newbie

Hello,

I've been reading a lot about Celiac's and I've long suffered from symptoms that really sound similar to what I read online. I know it's never good to self diagnose via the internet, but I'm without access to healthcare (no insurance) at the moment.

1) From the age of about 14-15 onward I've suffered from (this sounds gross and it is), painful lesions on my buttocks, sometimes with puss in them. And they NEVER seem to go away. Sometimes they subside for whatever reason, but they have always come back. It's long been a source of shame and embarrassment for me. Even sitting can be difficult. Sometimes the get infected and filled with puss. Like I said, totally gross.

2) Recently (I'm in my late 20's) I've been getting painful sores in my scalp, mostly in the back of my head and sometimes on the back of my neck. These suckers ITCH like crazy and often times become infected. I've got no idea what's causing them, I'm a clean person with SHORT hair. They hurt! I think maybe they are worse when I am stressed out?

3) On my face I've got what I've always have thought was acne. But I'm starting to think it is something else. It's usually around my mouth often times in the corner of my mouth, which is really painful. Recently (this has almost pushed me over the edge) I've developed what can only be described as a painful, red blistering area on the bottom/corner of my lip line/mouth. It makes me so embarrassed to interact with people. Sometimes I will wake up from a nap and have little red sores all around my lip line. Recently I felt inside of my mouth and I have an open sore. I don't remember biting my cheek or anything, I don't know where this has come from.

4) Lactose intolerance or so I think. I've long had what seems like a lactose intolerance. Whats weird is there never seems to be a pattern, sometimes it gives me the runs, other times I have nothing happen at all?

5) Small red marks on my chest and shoulders. These appear randomly. Like I said I'm a clean person, these look like zits that never come to the surface. Last week I had matching red marks underneath both of my armpits. One developed a white head filled with puss.

6) Last week I developed red sores in almost matching locations on my temples. I can't figure out what caused them. I had chicken strips covered in a batter the night before, I read that this can cause them? These are really painful and embarrassing as well. My forehead lately has been perpetually breaking out with little bumps that sometimes resemble zits, other times its just red marks that never go away.

7) In my eyebrows I get painful bumps that go and come as they please. I can't find the pattern.

Sorry for the long and drawn out post but I'm really losing a lot of my life to these ailments. They control me, they keep me from being happy and I'm really tired of it. My wife says its not that noticeable but for me, its very distracting. Does any of this ring a bell to anyone? Randomly I started using Anti Dandruff shampoo, Nazoril I think it is, on my scalp and I tried washing my bottocks with it. It seems to help? very strange.

Anyone out there.. does ANY of this ring a bell to you? Thank you for your time.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

What you are describing sounds an awful lot like the DH that plagued me from childhood. A derm can biopsy the areas next to the sores to look for the antibodies. Do find one who is familiar with DH as if the biopsies are not done correctly and they are not looking for DH they won't find it.

You should also get a blood screening for celiac although those can come back with a false negative also. After you have finished all the testing you choose to do try the diet, and be sure to eliminate gluten from all topicals also. It can take some time for the sores to heal but heal they will if they are a gluten reaction.

You may want to add a good 'stress' vitamin with high levels of the B vitamins. The sores you are describing in the corners of your mouth could be due to a deficiency in the B vitamins.

Beccels Rookie

Im not a Dr, but it sounds to me - like your body is trying to get rid of something that it doesn't like. And its coming out through your skin.

Why don't you just try, taking gluten, wheat and dairy out of your diet or just gluten. Its hard, I know - but its not going to have a negative impact on you. If you give it a red hot go for a for 4 or 5 weeks, you might see some results.

But it really is best to try and get to a Dr, obviously.

Archived

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

  • 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. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    2. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

    4. - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748

    jlcvt
    Newest Member
    jlcvt
    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

    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.