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
SasaMinks
Posted

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
pricklypear1971
Posted

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
Ksee
Posted

Anyone who "accuses" or blames is a jerk. 

notme Experienced
notme
Posted

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
NotMollyRingwald
Posted

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
powerofpositivethinking
Posted

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
SasaMinks
Posted
  • Author

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
nvsmom
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748
    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.