Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Advice? Possibly Symptoms? Long -sorry!


tmspitz

Recommended Posts

tmspitz Newbie

Hi,

I have been a long-time lurker, but wanted to get some of your

collective advice and wisdom, because clearly the doctors do not seem

to know, and I thought some of you might shed some light....

I'll give you a short history. A little over 6 years ago, I had what

the drs thought was bronchitis (turned out to be cough variant

asthma), and I was given several rounds of different antibiotics.

During this I started to have a lot of itching, that didn't go away

with OTC yeast med. My regular dr. gave me 1 pill of diflucan. It

didn't really help, but I was in the process of getting married,

changing jobs (and insurance) going on my honeymoon etc, and it

subsided a bit, so I didn't' do much about. After that I was in

graduate school and went to the student health center (thought it was

bacterial, UTI, etc) and finally referred me to a new gyn who thought

maybe it was herpes (no, tests came back negative)...

Somewhere in there I started having a lot of pain with intercourse,

but not at other times.

In between i have been to other gyns, a dermatologist, had a

miscarriage, then got pregnant and had a baby (now almost 2), so I

haven't been really too diligent about trying to solve this....Now, my

son is done nursing, I have a stable job, and I am really trying to

get some improvement.

I have most recently been going to a gyn specialist.

He has treated the pain and the itching separately. The pain I

have been using a lidocaine cream. I was using it about 4-6 times per

day. Now I only use it right before sex. It has been extremely

helpful, and I am basically in good shape on the pain portion of it

now. That leaves me with the itching.

Earlier this spring the dr. did a biopsy. It came back negative for

everything he tested. I have tried many topical treatments with no

success, as well as an injection. The latest thing is that he put me on hydroxyzine. It is an antihistamine. It is helping, not completely, but significantly. However, it makes me drowsy. Since its working he thinks that there is an allergy component, or at least a systemic, internal

inflammation. ..to the best of my understanding.

I am having a flare up now, or the last couple of weeks. I went in

and saw the nurse practitioner. She says I may have yeast, although

not conclusively. She said I have some symptoms, but not exactly.

she is sending a culture, but said that yeast doesn't always culture

well, so it is mostly a formality.

Ok, symptoms that I have with the itching....

- redness

- itching very localized to 2 or 3 spots, depending on the severity of

the flare up

- sometimes (particularly when there are flares) white sort of film

over the labia skin and whole area, sometimes white sort of clumpy

(but very small - not really cottage cheese like) discharge in the same area.

- one area that is always the worst, never goes away is right in the fold.

I already use unscented detergent, mild soaps, diva cup, cotton

underwear, no underwear to sleep....etc. ...

I am wondering about some type of chronic yeast (although the dr's

keep saying no, and cultures come back negative). Maybe a low level

amount, but chronic, or a rare form? I'm also trying to think what

else I could be allergic to...maybe some type of food allergy? What

would be systemic like that? My son has several food allergies and i

was already off of milk, nuts, eggs, soy, when i was nursing him.

A gluten allergy was suggested to me by a friend. If I were to go off of gluten, how long would I need to go off of it for? Any other thoughts? Any other things to try? I do have MANY environmental allergies (just had that testing re-done about a month ago), but no other known food allergies.

I apologize that this is so long. I want to give some history, and see

if anyone can offer any suggestions or thoughts. I am ready to try

some alternative routes. the drs obviously don't really know what is

wrong.

Thanks in advance for any help you can offer!

Tara Spitzer-List


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I am not certain that it is Celiac, but you might do well to try the SCD (Specific Carbohydrate Diet) as it will rid you of yeast and rebalance your system. It excludes gluten.

You might also consider a product called Betamannon.

Open Original Shared Link

I do not sell it and am not affiliated with it in any way, but it really helped me and my immune system years ago with female issues such as yours. You take it internally and intravaginally.

Wishing you well!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    5. - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,059
    • Most Online (within 30 mins)
      7,748

    Jessica A
    Newest Member
    Jessica A
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...