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      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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?
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SasaMinks    0

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

 

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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.

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notme!    287

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* :)

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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.

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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!

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SasaMinks    0

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?

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nvsmom    332

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.

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