Just Diagnosed

[Tara1205]

I am currently 29 years old, but since childhood (at least 10 is what I remember), I've always had "stomach issues". After several hospitalizations, GI appointments and countless medications, I just assumed I had a "bad stomach". Last week, what I thought was just another "ulcer flare", I called a new GI and was able to see him the same day. I explained my history for the past almost 20 years, described the current stomach burning and the many other issues I deal with from time to time. He asked if I was ever tested for Celiac, to which I replied never has that come up in any conversation. Anyhow, he sent me for a blood test the same day and an endoscopy a few days later. 

Yesterday, I received the results from the blood work stating I am "faintly positive". I'm still trying to gain an understanding of what that means. I was told once the Endoscopy results come back, I will have a more definitive answer. While all this is going on, I still continue to have a horrible burning pain in the upper, center quadrant of my stomach-right under the breast bone. I did eat something with flour and wonder if this pain could be related to Celiac.... I just find it so weird that all these years I've consumed gluten but not felt a pain like this so immediately (10 minutes after eating). 

I guess, I'm looking to see if anyone has ever experienced sudden illness after gluten and since I'm "faintly positive", if I don't stop consuming gluten will this disease become progressively worse? In my free-time I enjoy cooking and baking so this news has come quite as a shock because it will really entail altering my whole life... I understand it's not the worse disease to have, but it's still not any fun. 

Thanks for the support/answers. 

-T

[mamaw]

Hello & Welcome..... I a little confused as  you said" I did  eat  something with flour" so  does  this  mean  you haven't been eating  gluten? Please  clarify.... also  has  anyone  ever  checked  your gallbladder?  Make  sure  you are consuming  gluten  for  the  endo & ask for  5-6  biopsies....Do you also  have  stomach  ulcers?

[cyclinglady]

I did not have tummy issues, just anemia when my doctor ordered a celiac panel.  I was "barely positive" yet my biopsies reveal moderate to severe damage.  I was shocked.  First,  because I was not having tummy issues.  Second my hubby had  been gluten-free for 12 years.  What are the odds that both us had to be gluten free (and I knew exactly what the diet entailed since I cooked and kept him safe).  

If you are diagnosed with celiac disease and you continue to consume gluten, it will only get worse.  I had a seven week wait between my blood test and my endoscopy (work related issues caused the delay).  I ate gluten.  No, I inhaled gluten.  I knew in my heart that my biopsies were going to be positive.  I literally ate a loaf of good sourdough bread a day, along with all kinds of baked goods.  By the time I had my biosy, I had tummy issues.  Pain in my actual stomach, indigestion, pinching when I bent over, etc.  I never had diarrhea, really.  So, it really flared up fast.  I think I had issues for years, but my body just seemed to adapt.  Celiac disease symptoms seem to wax and wane.  

Two months after my dx, I fractured a few vertabrae DOING NOTHING!  

There is is a steep learning curve to going gluten free.  You will grieve.  But, you will learn to bake delicious things.  Heck, my FIL is getting gluten-free birthday cakes this weekend.    All the gluten eaters prefer my gluten-free cake over the best store bought cakes (even from the best bakeries! )

Your gallbladder?  If your diagnosis is negative for celiac disease, check for functionality.  Your GI can order a HIDA scan.  

Welcome to the forum!  

[Susi V]

Hi there, I have the same pain as you, which also contributed to my being diagnosed late as well.  High and in the middle.  I also get bloating along with other symptoms.  I have been gluten free for 5 months now.  I remember how depressing it was at first thinking all the things I wouldn't be able to eat and do.  But the truth is it definitely gets easier when you find all the things you CAN eat.  There is gluten free flour and some brands actually taste normal.  You'll still be able to cook and bake great food.  I was told it takes 5 - 6 months to start feeling better and it's true.  We're really left with no choice when it comes to our health.  Good luck!

[nvsmom]

Welcome to the board, and to you too, Susi V.  

Keep in mind that a faint positive is still a positive, It still means you have celiac disease.

I like to compare weak positives to a weak positive pregnancy test, it still means a pregnancy.  If you ignore that faint positive chances are very good that your health will deteriorate. It may not happen immediately but it will happen.  You'll get nutritional deficiencies which may lead to treatable problems like anemia, or permanent problems like osteoporosis, ataxia, neuropathies, pain, hashimoto's or even permanently thinned hair.

Going back to the pregnancy test, if you ignore the posiive test, it doesn't change the fact that the condition will progress and a baby will be there in 9 months. If a celiac disease test is ignored, there will be life altering changes too.

Going gluten-free does involve a big change.  The first few months are hard - no doubt about it - but you will move on. You'll find brands of bread, soy sauce, and salad dressings that you like.  You'll learn new ways to cook and how other flours can be very tasty, or even healthier than what you use now (I love coconut flour, myself). It is a hassle but long term it is worth it.