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. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - trents replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

    4. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

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

    • Total Members
      133,622
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Florence Lillian
      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    • knitty kitty
      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
×
×
  • 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.