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

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


Ads by Google:

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
      104,697
    • Total Posts
      921,781
  • Topics

  • Posts

    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined