Diagnosis Received

[SimonSez0721]

So, I received my diagnosis, yesterday. My endoscopy was clean both visually and from the pathology report. The only thing that was identified as being somewhat out of the ordinary is that my duodenum is inflamed. The inflammation is classified as mild to moderate.

My GI diagnosed me as Non-Celiac Gluten Intolerant, possible IBS. He wants me to go see the surgeon who removed my gallbladder, in November 2011, to discuss the possibility that there might be scar tissue or adhesions in my abdomen causing my abdominal distress. This seems unlikely to me, but I will go.

So, I'm not sure where I belong now or what I should be doing. I know it's time to go gluten free. Should I be doing that here? Should I be looking for a supportive IBS community? Maybe a Multiple Chemical Sensitivities community is more appropriate. Once again, I feel like a step-child. I feel a little lost and a lot overwhelmed.

Your input would be really appreciated,

[cyclinglady]

I would certainly consider going gluten-free for six months. It certainly can not hurt and your doc did give you the NCGI diagnosis.

I was formally diagnosed last year, but my husband has been gluten-free for 13 years. He went gluten-free at the advice of his GP and felt great. No more snoring, chronic sinus infections, bad body aches (like the flu) and fatigue.

You should have your bile duct checked. My GB was removed over seven years ago, but no problems. My aunt had issues with her bile duct and needed a stent.

Hope you find your answers!

[SimonSez0721]

CyclingLady,

Thanks for your reply. Yes, I am going gluten free. Today was day one. Everything was fine and I was feeling good until my eldest walked into the family room with a beautiful, new box of Cheez Its. It was so shiny and pretty. How could I resist? That was just cruel beyond cruel of her! What was she thinking? OK so, I caved, but I only had one handful. I'm detoxing I guess. I think it will be a slow, painful process for me.

You suggested having my bile ducts checked. What should the be checked fo?

It is great to hear that so many of our health problems resolved once you stopped eating gluten. My GI suggested that that might happen for me as well. We will see, I guess.

[IrishHeart]

I see you have "fibromyalgia" in your sig line. And migraines and OA, and ...well, you sound exactly  like me! Everything you had, I had and then some. .How many syndromes can your doctors diagnose you with until they see the big picture? Syndromes are just a collection of symptoms, not a diagnosis or a resolution to the problem. You have to look at the cause.

 

At least this doc has told you the one thing that may actually help you! NCGS is a serious medical condition that has a treatment. (unlike all those syndromes)  The G F diet.

 

Those were just a few of the many symptoms/syndromes like yours that  I had --IBS and GERD too- and my gall bladder went south as well...-but they were all actually gluten/celiac induced. That Myofascial pain can resolve and the osteopenia can reverse. I am living proof. And I am not the only one on here that can tell you a similar story.

 

I was once on 12 different meds for all those "syndromes". They did squat for me. My life became pain hell. I take nothing now and work out at a gym 3X a week. I could barely walk at one point and lived in the bathroom. 

 

Your endo and biopsy may have been "clean" but that does not mean gluten isn't causing your body great harm!!!.  Many Pub med articles on NCGS discuss the extra-intestinal symptoms that it can cause.

 

Please, give the gluten-free diet a good solid 6-9 month trial and I am thinking those syndromes and the vast majority of your symptoms may very well resolve. You will feel so good, you will keep at it.

 

A box of Cheezits is not worth all that pain.

Van's makes G F cheese crackers that are even better anyway!

 

Please, read this thread and start healing your body right now. Take a good quality probiotic and best wishes!

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[cyclinglady]

I would try the gluten-free diet for six months before messing with my gut with surgery. I am not a doctor, just passing information about my aunt. We have a gallbladder curse in our family and since I am the first to get a dx with celiac disease, I think the root cause has been gluten. Two more members are gluten free even though they did not test for celiac disease. Both are nurses and decided to give up gluten on their own and now feel great.

That said, you do not have a gallbladder. Where is the bile to go? You ducting tends to get stretched out. Hard to keep the flow gin properly. Those of us with our GB have to watch out for fatty foods. My aunt required a stent to help keep her duct open. Each case is different.

Please try the diet!

[GottaSki]

Welcome!

 

Simon says....remove ALL gluten today

 

In all seriousness....all of your health issues could improve or completely resolve living gluten-free and you have come to the correct community...we understand.  Far too many of us went misdiagnosed/undiagnosed for decades while our health continued to decline.

 

The transition can be tough....the "Newbie 101" thread can help ease the way.  Give it a thourough read then let us know if you have questions.

 

Love your screen name...

 

Simon Says....Ready, Set, Go Gluten Free!!!

[GF Lover]

So, I received my diagnosis, yesterday. My endoscopy was clean both visually and from the pathology report. The only thing that was identified as being somewhat out of the ordinary is that my duodenum is inflamed. The inflammation is classified as mild to moderate.

My GI diagnosed me as Non-Celiac Gluten Intolerant, possible IBS. He wants me to go see the surgeon who removed my gallbladder, in November 2011, to discuss the possibility that there might be scar tissue or adhesions in my abdomen causing my abdominal distress. This seems unlikely to me, but I will go.

So, I'm not sure where I belong now or what I should be doing. I know it's time to go gluten free. Should I be doing that here? Should I be looking for a supportive IBS community? Maybe a Multiple Chemical Sensitivities community is more appropriate. Once again, I feel like a step-child. I feel a little lost and a lot overwhelmed.

Your input would be really appreciated,

 

Hi SimonSez,  Like Irish, I also had the whole collection of AI syndromes.  Let's see: Bi-Polar depression, fibro, myofascial pain, raynaud's, IBS, syncope, sjogrens's, osteopenia, spinal stenosis, migraines, gerd, carpal tunnel, bursitis of hips, peri-formis syndrome, sacroiliitis, and possible lupus.  All are caused by inflammation. Almost all resolved on G F Diet,  I still have some spinal stenosis, hypothyroidism and some arthritis in my hands but not all damage reverses or takes lots of time.  My mental health issues are completely manageable now and feel better than I have in thirty years.  Inflammation is a beast and can wreak havoc in your body.  Again, like Irish and others, I was on around 15 meds including pain killers, steroids, anti-inflammatories, anti-psychotics, depression meds, anxity meds, you get the picture.  Gluten was killing me slowly.  

 

Forget about the cheez its and start a G F Diet and do it the right way.  Read the Newbie thread as suggested and start healing.  

 

Colleen

[NoGlutenCooties]

Hi SimonSez -

 

You are not a step-child around here!  There are many folks here who have NCGI, not just Celiac.  The treatment is the same for both - 100% gluten-free diet.  No cheating.  You will likely find that your IBS symptoms go away once you go gluten-free.  I think it's a good idea to check in with the surgeon just to see what they have to say - but I'd be hesitant to jump into surgery before seeing what the gluten-free diet does for you.

 

FWIW... a single Cheez-It would just about kill me... let alone a whole handful!! 

[squirmingitch]

I agree with what everyone here says. I am a little different than them b/c I have the skin presentation of celiac disease & didn't have all the awful, extreme GI symptoms the others had --- instead I get a horrid blistering rash called dermatitis herpetiformis & that means I have celiac disease. But I still did have some GI symptoms like never ending indigestion, nausea, gerd, belching like a sailor, bloat so bad I thought my body would just end up exploding from my stomach being so unbelievably distended & tight. I also did have periods of "D" but that would only happen maybe every 2 weeks or so but the terrible pain in my gut when it happened made me want to scream. I had migraines for 25+ years. Docs wanted to put me on antidepressants but I refused. Yay me! I was dx'd with spinal stenosis, osteopenia, carpal tunnel. I was prescribed  epidural injections for my neck & spine pain & the debilitating pain throughout my entire body that was unendurable & made my life torture. Parts of me would either swell up &/or get so screamingly painful that I could not stand even a kleenex tissue touching me. I can't tell you how many times I could not use my hands b/c they were incapable of movement & indeed, just the vibrations from me walking made them hurt so bad I have no words to describe the pain. That kind of stuff would travel around my entire body --- didn't matter where; it could be a knee, hips or just the forearm or calf. I have been strict gluten-free for 2 years & almost 2 months. I have not had an epidural injection since going gluten-free & I no longer have those symptoms that caused me to get them. I had fatigue & have so much more energy now. I don't have bloat, gerd, no periods of "D" or the cramps it caused in my gut, no more belching -- heck I don't even burp ladylike burps! LOL! I had the feeling of needles in my hands & feet but no more. One of my fingers would go numb, blue then white & hurt like hell when the finger got the least bit cool --- it hasn't done that in I don't know how long now. I have no depression, no rage, no dizziness, my mind is clear again, no brain fog & forgetting words like "fork".

 

I urge you to give the gluten-free diet a trial of 6 to 9 months. Please! And no cheating. Do it for yourself, do it for your children & grandchildren.

[SimonSez0721]

Thanks, everyone! OK, you convinced me. I admit that I have felt that NCGI was not all that big a deal. But, you are right, and I know better. It is most likely the cause of many if not most of my medical woes. I just need to move past my denial and start taking care of myself by doing what is called for. Follow the Gluten Free Diet.

Thank you for your words of encouragement.

By the way, the Cheez It's, totally not worth it! I'm still uncomfortable!

[squirmingitch]

Hooray for you SimonSez!!!!!! We're here to help you & hold your hand. We'll listen to you cry & cry along with you. We'll help throw a pity party with you. And we'll also celebrate with you when things improve. 

(((HUGS))))

[GF Lover]

Simonsez, I'm glad we convinced you!!! Your health is too important to not do everything you can to feel better.  Like Squirmy said, we are here to help you, listen to you and celebrate with you.

 

Colleen

[GFinDC]

Hi Simon,

 

Here are a few threads about NCGI.  Research has proven that it exists, but they don't know a whole lot about it yet or what kinds of damage it may do over time.  NCGI does cause an immune response, but a different response than in celiac disease.  So how serious is it?  Nobody knows for sure right now.  It's interesting though that there is a possible link in Crohn's disease and the innate immune response.

 

Since no long term studies have been done on NCGI that consequences of it are just a guess at this point.  But we do know the inflammation can cause plenty of problems in the body.

 

If you can switch to eating mostly whole foods your chances of getting into hidden gluten are much lower.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

Gliadin Triggers Innate Immune Reaction in Celiac and Non-celiac Individuals
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

[SimonSez0721]

Thanks to all! Your words of encouragement are of great comfort. I had rice pasta last night with gluten free sauce and my daughter took me shopping today for whole olds and a few gluten free items.

I know that learning a new way of eating is more complicated than just saying no to bread but for now, I feel like I have a place to start.

Thank you,

Simon

[squirmingitch]

We all started somewhere. You will get there, just take it easy & don't let it intimidate you.

 

 

Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy Simon!

[GottaSki]

Yep....we have all been there...transition takes some time....for now we celebrate a great start.

 

Yay Simon 

 

Let us know if we can help.