Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dr Had Me In Tears :( Could Pupps Have Been Dh?
0

8 posts in this topic

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

 

0

Share this post


Link to post
Share on other sites


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.

0

Share this post


Link to post
Share on other sites

Anyone who "accuses" or blames is a jerk. 

2

Share this post


Link to post
Share on other sites

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* :)

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

 

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

 

good luck!

1

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,702
    • Total Posts
      914,492
  • Topics

  • Posts

    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Good idea! Add also the lactulose - mannitol test, to confirm they are/are not experiencing leakyness in the gut, then correlate the results with the symptoms (obviously digestive symptoms would have to be excluded, because diarrhea and bloating will probably be present anyway, due to having damaged intestines). You see, ironically it would be "gluten-free challenge", because possibly systemic symptoms ("leaky gut syndrome")  and GI symptoms start after going IV fluids -> gluten-free (instead of "gluten challenge", which would be gluten-free -> gluten).
             
    • "Pre-Celiac" & scared
      PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease. The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system. Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor! Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea.  You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia. I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer. Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.
    • Second Panel has come back...advice?
      We are utilizing the "our kitchen is completely gluten free" and DEFINITELY checking every label every time methods. SO glad to hear my DGP should drop!!!! 
    • Celiac in 10 month old?
      Without reference ranges for the IgA there's no telling wether the IgA or tTG are anything worth while.  I think your best bet is to wait on a call from them for interpretation. I know that's hard but really, they are the ones with all the necessary information.  
    • Celiac in 10 month old?
      Hello all, new to this site!  My 10 month old son was referred to an endocrinologist as he has consistently failed to chart in both weight and height.  After discussing his symptoms with the endocrinologist (fussiness after eating, diarrhea) she suggested it could be Celiac disease.  She ordered several blood tests to which I have received results that I am not quite sure how to interpret (and of course I haven't heard back and she hasn't returned my messages).  The following abnormal test results I received: Immunoglobulin A:  Less than 8 mg/dl IgA TTG Antibody:  Negative (I've read this can be a false negative if he is IgA deficient?) SGOT/AST:  93 U/L (standard 25-55) SGPT/AST:  49 U/L (standard 13-45) IgF-1/Somatomedin-C:  Less than 25 ng/ml (standard for age range 16 days to 1 year is 55-327) Any insight into what these results mean would be extremely helpful and appreciated!  Also, my son has been exclusively breastfed; if he does, in fact, have Celiac disease is gluten transferred through breast milk? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,739
    • Most Online
      1,763

    Newest Member
    larnotlars
    Joined