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

Dr Had Me In Tears :( Could Pupps Have Been Dh?


SasaMinks

Recommended Posts

SasaMinks Rookie

Dear all,

 

Please help - I'm desperate for some advice! A few years ago I was diagnosed with IBS but when I fell pregnant last year my symptoms got A LOT worse. The few months (my son is 16 months now) it's been unbearable and today I ended up in the walk in clinic because my stomach bloated out by about 6 inches over the course of the morning. (I have mentioned issue to dr before but they keep muttering IBS IBS IBS). Anyway, I have been doing some research and I have been beginning to suspect a gluten intolerance. When I got to the clinic I showed her my stomach and told her I have:

 

Severe fatigue - especially after eating (anything not just gluten) - and even after a full nights sleep

Really bad bloating (people keep asking if I am pregnant)

Awful gas

Terrible migraines and headaches

Foggy brain/lack of concentration

Constipation and piles

 

When I was pregnant I was diagnosed as anemic and I also developed a horrendous case of PUPPS (polymorphic eruption) which, not that I'm researching, looks EXACTLY like DH - red, terribly terribly itchy blisters across my tummy, back, arms and bum. (It went a few weeks after giving birth).

 

Anyway after telling the doctor all this (admitedly in tears) she accused me of having post natal depression because I was clearly feeling 'low'. I was then even more upset - (of course i feel low you moron did you not hear all my symptoms??) I tried to explain that actually I'm getting married in three weeks and aside from my health things are great and I'm not depressed just peed off with feeling ill all the time :(

 

I did do a home bloods test for IGA levels which came up negative - so now I don't know if I was mistaken afterall - can anyone here help/advise? do these symptoms sound familiar???

 

I'd be really grateful for any comments/suggestions, thanks all xx

 


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Yes.

You need a complete Celiac bloodwork panel run. The home test is not definitive to rule Celiac out. Also, you could be NCGI - and the only test is a gluten-free trial.

I would also suggest a complete thyroid work up - tpoAb antibodies plus free t3/4/reverset3 in addition to tsh.

That doctor was a jerk.

Ksee Rookie

Anyone who "accuses" or blames is a jerk. 

notme Experienced

for 25 years they muttered IBS< IBS< IBS to me - i have come to the conclusion that is what they tell you when they have no clue what is wrong with you.  my symptoms were also triggered by pregnancy, so that is suspicious right there, also very common with celiac.  get yourself tested and good luck (congratulations on your baby!!!) everything you have listed sounds very familiar.  the good news is, if you do indeed have celiac disease, the cure is a *diet* :)

NotMollyRingwald Apprentice

I agree with the above!  If your gut (pun intented) is telling you there is something wrong, I say believe it.  Can you see a different Dr for a second opinion?  Maybe check with family/friends/co-workers who have a good Dr and get a referral??   Big hugs to you sweetie.

powerofpositivethinking Community Regular

i'm so sorry you were treated that way  :(  please go find another doctor!

 

a complete celiac blood panel is:

DGP iga/igg

TTG iga/igg

EMA

Total IgA serum-this is a control test to make sure you produce enough igA antibodies

 

linked below is one of my favorite documents because it was written by the World Gastroenterology Association and the USA review team contributor, Dr. Fasano, is very well respected in the celiac world.  my GI actually took a copy of this write-up since I just "happened" to have printed out two copies :D   check out pg. 7 with non-classic symptoms.  bloating and constipation.

 

Open Original Shared Link

 

 

good luck!

SasaMinks Rookie

Thank you so much for your replies and support - it really helps! I got back to a different doctor today who is doing blood work for celiac, thyroid, vit D and some other things (I lost track...)  oh and also wants me to have a scan. He did push the IBS thing - maybe he's right - but at least some sort of investigation is happening rather than just trying to mask my symptoms.

 

I'm getting married in a few weeks so I'm a bit upset that it's reaching at peak right now - he suggested going gluten free on friday after the blood tests but with the wedding only two weeks later would it be time enough to make a difference if gluten is the issue do you think??

 

Also really interested to hear of anyone who had DH come up during pregnancy?


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I two weeks gluten-free, you can get through withdrawal (if it will happen for you), and most people will find that their bloating, stomach pain and often headaches could clear up by then too. I would go gluten-free as soon as possible, if you are able.  Good luck.

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. - Rogol72 replied to suek54's topic in Dermatitis Herpetiformis
      9

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      9

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - trents replied to dani nero's topic in Dermatitis Herpetiformis
      191

      DH Photo Bank

    4. - KeriRae replied to dani nero's topic in Dermatitis Herpetiformis
      191

      DH Photo Bank

    5. - Aretaeus Cappadocia commented on Scott Adams's blog entry in Gluten Busters: Gluten-Free Product Alerts by Celiac.com
      7

      Simple Mills and Made Good Foods Products May Contain Gluten Levels Above the FDA's Allowable Limit of 20 ppm

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,717
    • Most Online (within 30 mins)
      7,748

    Lellymay
    Newest Member
    Lellymay
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Rogol72
      Hey @suek54, I also have Dermatitis Herpetiformis. I used to be on Dapsone but have managed to wean myself off it after many attempts. It's quiet a toxic drug, as it affects the bone marrow and red blood cells. It also artificially reduces Hemoglobin A1C. Mine was at 21 at one stage, I think normal is around 37. With dermatitis herpetiformis, you need to be really strict. It wasn't until I focused on getting the trace minerals the body needs that I managed to get off it. I believe getting the thyroid numbers in the optimal range also helped with Iodine and Selenium. Iodine doesn't bother me for some reason, but flares others as knitty kitty said. I take Viridian Trace Mineral complex and it's made a huge difference, among other vitamins and minerals. Now I can tolerate gluten free oats which I could never eat before. Though I only have them very occasionally in the form of gluten free soda bread . One thing I miss is my Mums Irish soda bread. Hope this helps.
    • suek54
      Hi all Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free  adaptations for most recipes.  I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far.  Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though nowhere near as severe as they were, so I am hoping for an increased dose, as the effect only seems to last 6-7 hours.  I think I may be burning through it more quickly than some due to other medication. Also I cannot mount a response to inflammation due to Addison's Disease.  I hope others are finding their way though the minefield that is dermatitis herpetiformis. Hang on in there! Sue (in UK)
    • trents
      @KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?
    • KeriRae
      I've had this same rash on my back on and off for the last year or two.  I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash. 
    • Russ H
      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
×
×
  • 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.