Post Diagnosis Concerns

[Kurt]

I'm a 45 year old man that was recently diagnosed with Celiac Disease by colon biopsy after a bout of colitis that came on out of the blue and went away quickly.  I had none of the symptoms of Celiac disease before starting the diet, and I feel exactly the same after a week on the diet.  

My concern is that with absolutely ZERO symptoms how will I know if I'm getting cross contamination?  I have 6 children so there is going to be wheat everywhere.
  
Is this diagnosis is even real?  

Without some sort of at-home test to know if any of this is doing anything, going on this diet is about as hopeless as my dream of becoming a rock star.

 

Regards,

Confused and Frustrated.

[GFinDC]

Welcome to the forum Kurt!

Here are the blood antibody tests they do for celiac disease.  Each of theses tests also has a range for normal antibody levels.

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and DGP IgG
Total Serum IgA

If you are positive on the immune reactions then they do an endoscopy to verify there is damage to the villi linlng of the small intestine.  Together these tests being positive mean you have celiac disease.

Not having symptoms but still having celiac disease is called "silent celiac".  We have other people on the forum who have silent celiac disease.  Just because you don't have digestive symptoms doesn't mean you don't have symptoms also.  Many people with celiac don't have digestive symptoms, but have some other symptoms like skin rash, joint pain, nerve damage, hair loss, depression, insomnia, fatigue, brain fog, fertility issues etc.  There is a really wide range of possible symptoms outside the GI system.  So it's really hard to diagnose someone with celiac disease by symptoms alone unless they have the classic GI symptoms.  Which turns out to be less than half of people with celiac.

I suggest you read the Newbie 101 thread in the Coping With section for tips.  Going gluten-free is something that takes some time to learn right.  I suppose it took me 6 months to get it sorta right.  I suggest you avoid most processed foods and stick to whole foods instead.  Meats, veggies, nuts, eggs, and fruits are naturally gluten-free.  You may find that you develop gut symptoms after a while also.  But if you don't, you can still get a followup antibody test done in 6 months to see if your antibody levels have dropped.

There is a gene test for celiac disease.  You might consider getting your kids tested every couple years or sooner if they show symptoms.  Having the genes doesn't automatically mean you have celiac disease though.  Just that you might develop it.  You got the genes from one or both parents, so they or any of your siblings may have celiac also.

You should get your vitamin and mineral levels tested also Kurt.   Celiac can cause malabsorbtion which is a bad thing also.  For kids it can result in short stature.

 

[Kurt]

Thank you for the thorough response GFinDC!  That is a lot to digest, no pun intended.  I almost want the gut reaction if I have it, because I have suffered from depression, back pain, fatigue, and possibly brain fog, but none of the symptoms are particularly acute.  I figured the last three symptoms were just middle age. 

[cyclinglady]

Welcome!  

So, your doctor gave you a diagnosis based on what a visual on a colonoscopy?  He managed to get to the end of your small intestine (it is possible)?   celiac disease does not present with damage to the colon, but IBD disorders like Crohn's (affects entire GI tract) and Ulcerative Colitis (affects just the colon) do.    Of course it is possible to have one or more intestinal disorders.  Your celiac disease diagnosis should be based on a bloody test and actual biopsies (e.g. My visual on the endoscopy looked normal but biopsies revealed villi blunting) in most cases as there are many things that can cause villi damage beside celiac disease.

Keep in mind that just being on a Gluten free diet can ruin the blood tests results in as little as 2 weeks. So, if you were not tested, get tested after getting back on the diet.   I would advise obtaining copies of all your test results.  Your GI could be wrong, he could be right and you just left a few things out of your posting.  

For the blood test (you should have a baseline for future testing/dietary compliance):

Open Original Shared Link

Follow-up care:

Open Original Shared Link

gluten-free I. D.C. Is right that all first degree relatives should be tested even if symptom free.  They have a 1 in  22 chance of developing it at anytime.  Just the antibody blood test will do.  You can consider genetic testing, but the antibody blood test is way cheaper.  My kid gets tested every three years (symptoms or no symptoms). 

As far as the diet is concerned, depending on your damage and the fact we all are different with different systemic issues (e.g. Osteoporosis, joint pain, rashes, etc.), it can take a year or more to heal.  It can take weeks to see any improvement at all.

Six kids?  Odds are one or more have it.  Any tiny ones in you family?  Constipation or tummy aches?  Household?  You will learn to manage Gluten.  If more than just you has it, go gluten-free in the house.  My kid eats gluten outside and in her school lunch.  Makes me and her Dad feel safer.  But shared household work, but strict rules have to be in place.  One of our members, a celiac premie doctor, was getting glutened by her four little ones.  Her household went gluten-free.  She could not afford to miss work.  And yes, your spouse needs to brush her teeth before kissing you.  

Read up, research, and learn.  celiac disease is  not awful.  It is the best autoimmune disorder to have as it can be managed with diet.  Feeling great is awesome.  Soon you will be feeling well!  

[Kurt]

It is not economically feasible to go gluten free for 8 people without government assistance.

[cyclinglady]

9 minutes ago, Kurt said:

It is not economically feasible to go gluten free for 8 people without government assistance.

Yes it is.  You just have to rethink your diet.  Some cultures never see wheat, rye or barley in their diets.  The gluten-free diet should focus on meats, fish, veggies (potatoes) , fruit, non-gluten grains (like corn and rice), nuts, dairy, and eggs (might have left something off) and not processed--very expensive--gluten-free foods (cookies, pasta, gluten-free bread, etc).  But a shared household is not impossible.  It just takes a plan and training.  

What is expensive is not being able to work (lost wages/jobs) and increased medical bills.  

[dharwood]

Hey Kurt - Not sure this will help, but this is my story and advice. I am 53 y.o. male, retired with 21 years active service in the Army. Early last year, I was having some really bad lower back pain which I had never really had before. I have always had G.I. issues but always managed. I had been on PPI's (Prilosec) for the last 10 years, sometimes taking as many as 3 a day. It helped with the GERD but not completely. Doctors put me in PT for my back and during the stretching I noticed my hip really started bothering me. Xrays showed a little arthritis and possible bursitis. About a month into it I just started aching all over, mainly the large muscle groups in legs and arms. Also a little bit of joint pain. By May, it had gotten really bad and between constipation and diarrhea I went in for some blood work. I came back positive for Celiac, and my rheumatoid arthritis numbers were elevated. The doctor put me on a gluten free diet and set me up with a Rheumatologist and Gastroenterologist. I was not able to get into see the Gastro until 2 months later. Of course I had been gluten-free for two months so the biopsies came back okay and my blood work was good also, although my Gene testing came back positive. I had not had GERD since going gluten-free so I decided to stay with the diet. The Doctor said I was Gluten Intolerant but not Celiac. It was not until I found this site that I realized I should have been on gluten right up to getting biopsies and blood work. Now I am unsure of my diagnosis.

Now, during this time there were periods that were unbearable. The pain/aching was really bad, but what I struggled most with was depression, anxiety and brain fog. There were days at work where I honestly could not do simple things, I was talking to myself, thinking people were out to get me... really crazy stuff. I had no self worth, and felt I was a huge burden to myself and more so on my family. I wept, sobbed uncontrollably, removed myself from any social activity and stayed in my room. I had never felt like this in my life and could not understand why this was happening, and it scared me that I had absolutely no control over it. None.  I was scaring my wife, and quite frankly would have loved nothing more than to have my life ended somehow. The Army doctors blamed it on PTSD and stress, and sent me to Psychiatrist after Psychiatrist who would throw a new pill at me each time. (some of which contained gluten I later found out) some of it may have helped, or at least got me through to the next week but the body aches and pains were still there. 

This brings us to present day, over 7 months and I still cannot do 1/8th of what I was doing a year ago. Still have the fatigue, muscle and joint pain. My mental state has improved, but it was such a realistic, scary event in my life, that I sometimes wonder if I will ever be the same again. It is a struggle everyday, ain't gonna lie.  My plan is to get a GI Dr. who is somewhat knowledgeable in Celiac, and do the gluten challenge so I can figure out if it is Celiac or just an intolerance. Either way, I will stay gluten-free after the tests, and continue to eat better. It would just be nice to know that if I get cross contaminated it isn't messing with my immune system, and it may just give me GI issues for a couple weeks. Like you, I have no idea what happens if I eat gluten for sure. 

My advice - keep an open mind and learn as much about Celiac disease as possible, god knows you will be smarter than a lot of doctors out there - Trust me on that one! Do not give up testing and follow up testing. To this day they still have not done any follow up blood work on me. TriCare is a struggle, as are the doctors. (that's a whole other story). Learn about gluten and what it's in. Everything from chapstick, toothpaste, medicine to drywall dust. Lastly, and perhaps the hardest for me, try not to let your mind wander down the wrong Google path of diagnosis. There were times over this last 7 months that I thought I had every disease on this planet, but Celiac. Google is a good tool, but it can worsen the anxiety ten fold.

Good luck Kurt, this Forum has helped me immensely. Welcome.

Doug

[ravenwoodglass]

Dharwood you had positive blood work, positive gene test and are seeing improvement on the diet. After 2 months your antibody levels had gone down from being gluten free.  You really are diagnosed. Your body has shown you that by the antibody drop. 

[Fbmb]

Hi Kurt  I was diagnosed in November. I'm 29 and I did the blood tests on a whim. I had a bug and it wouldn't go away so I figured I'd check for it since I have a family history. Turns out I had significant damage. And my GI doesn't think my bellybug had anything to do with celiac. So I was a silent celiac too. I've always been healthy. Had normal blood work. I have had 2 healthy pregnancies and babies. All along I had this. It threw me for a loop, so I'm with you.

[Kurt]

Thanks all for sharing your experiences.  I have also suffered low level depression and lack of interest in professional endeavors the last few years, which I am hesitant to associate with Celiac disease until its proven.  I've been on the diet one week today and I believe I have more energy and more interest in things.  Of course its too early to really tell for sure.  I will post an update in a few weeks.

One possible side effect so far is that I have had a difficult time falling asleep the last two nights because my mind is filled with so many thoughts.  I've become accustomed to being mentally exhausted by 4 pm.

[Jmg]

Hi Kurt,

The popular conception of celiac symptoms doesn't reflect the reality, it's such a strange condition in that it can present in so many different ways, so although you may not have the digestive issues which most will say define celiac, there's a lot of different ways where it may be affecting you. Take a look at these lists for instance:   

Open Original Shared Link

or this one which goes a lot further https://glutenfreeworks.com/gluten-disorders/symptom-guide/ 

My own experience was that having changed my diet to try and solve one issue I then found a multitude of other conditions which I'd been living with suddenly improved also. So it helped lift my depression, ended brain fog etc but I would never have believed that my back pain for instance was related to gluten, or the chest pains I suffered.

Reading this forum helped me put more of the jigsaw puzzle together and I was still finding symptoms I'd been suffering from 2 years after going gluten-free. I'd suppressed or ignored each one as part of the aging process etc.

So, although you may simply have silent celiac, it may be that you will find further down the road that you weren't quite as symptom free as you thought. It may be an obvious thing or perhaps more subtle, like recovering quicker from colds than you did in the past.

The good news is that you have a diagnosis, so you have a degree of certainty. I hope you can fall back on that when the tempting voice inside pipes up and suggests you relax the diet in one way or another. It's never a good idea!

Best of luck