Military And Celiac

[leikela]

I'm posting this on behalf of my husband, Nathan, who has recently had a number of health issues come up. I was diagnosed with celiac disease 5 years ago and have noticed a huge similarity between his symptoms and mine pre-diagnosis. I cook gluten-free meals for our family, but he eats his own gluten-filled cereals and breads, pizza, etc daily...

He is in the Army and has been worked up back and forth by the military doctors and clinics all to no avail. They did CT scans, ultrasounds, numerous blood tests that all came back "normal." His symptoms started as general discomfort on his lower right side, which made dr's think appendix or gallbladder problems. They did a thorough scan of his organs and everything checked out just fine. Then it became more like reflux and wanted him to take Zantac, then switched to Prilosec. He hated the Prilosec and switched back to Zantac as needed, but it still did nothing for the abdomen problems. Long story short - he has been extremely healthy and fit his whole life. Now, he's 25 and for the last two - three months has been dealing with bouts of diarrhea or constipation (without dietary change to prompt it) he's never been constipated before in his life, having neuropathy in his toes and fingers, severe joint and shin pain, almost constant abdominal discomfort, reflux, and the list goes on. In the beginning I jokingly said he was turning into me, but as his problems progressed it seems as if he really is! All of the things he's feeling i felt before diagnosis as well - chronic constipation, neuropathy, joint and bone pain, abdominal pain, etc.  He went gluten free for about a week and felt notably better. Originally we weren't planning on searching for a celiac diagnosis because of his Army status. Army can't accommodate a gluten-free diet so there is a strong chance he would be medically discharged if celiac was confirmed OR confined to desk jobs and not participating in field training that involves eating MREs. 
But now he has come to the point where he just wants to KNOW what is going on with his body. After his couple days of being strictly gluten free he went back to his normal diet. I told him that if he wanted to be tested he needed to keep eating it until after the testing was finished. So he went all out, making sure he was getting a substantial amount of gluten in his system daily.  Since doing this he's felt worse than ever. More neuropathy, more bone pain, more stomach pain. Another issue we're not sure is related to celiac or not, but he's started getting what a dermatologist told him was cherry angiomas. Again, he never had them before - I've heard they can be related to age. But it seems highly coincidental that in the middle of all this he suddenly gets about 20 of them. Along with these odd raised white marks that look like scars on his body. That's a new one for me, never heard of that before.  

He saw a civilian GI today. We've been super hopeful that they would be helpful and take the appropriate steps to either confirm or rule out celiac as a possibility. In order for the Army to take consideration of his dietary needs, he must have a diagnosis. I assumed they would order him a full celiac panel, plus endoscopy since he was meeting with an actual GI. He just called and said they're only going to do an endoscopy on him, but said they didn't think blood work was necessary as the scope would tell them everything they needed to know. I've sort of taken myself out of the world of celiac diagnosis these last 5 years, but... is that normal? It seems to me like it would be way easier for them to get a false negative with the biopsy. I'm hoping that if he pushes more at the next appointment they will let him take it. It's a blood test for pete's sake. A lot less invasive than a biopsy. Do you think the endoscopy is reliable enough alone for diagnosis? My fear is that they will biopsy healthy tissue, tell him it's not celiac, and automatically stop further investigation into his problems. It seems a lot more logical to me that they would do blood work and endoscopy. 

Any advice or suggestions? 

 

Thanks in advance,

Rachel

[mfarrell]

I was told that both the biopsy and the blood work are needed for a proper diagnosis.  Once my biopsy showed gluten enropathy the doctor ordered the Celiac and Celiac plus blood panel. 

[ravenwoodglass]

This doctor is working for you demand a complete celiac panel and that the doctor take at least 5 or 6 biopsies. If the doctor refuses fire him and find another GI doctor. 

[nvsmom]

I agree.  The best way to get a celiac disease diagnosis is to run as many tests as possible because ALL celiac disease tests can miss celiacs.  The biopsy can miss up to 20% of celiacs, and the blood tests can miss up to 1 in 4 to over half (in the old anti-gliadin antibody tests).  Get the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and at least 6 biopsies taken when the endoscopic biopsy is done.

 

It sounds like you should maybe do the same...

 

Good luck.

[cyclinglady]

Why wouldn't your new GI follow standard GI procedures for diagnosing celiac disease?  Here's a link from the American College of Gastroenterology:

 

Open Original Shared Link

 

Other links from the US Government and leading celiac disease research hospitals:

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

So, the first step is testing for antibodies (blood test) and then biopsies of the small intestine (up to 6 samples).  I recommend as NVSMOM suggested a full panel.  That's is because my GI ordered a full panel for me.  Good thing because I tested positive on just the DGP Iga test and was negative on the ttg which my doctors thought was pretty weird!   My biopsies revealed moderate to severe intestinal damage.

 

Good luck!  

[MsMarginalized]

The U.S. Military is a bit of an anomaly. They say they want the best & will help their troops....but it ain't always so!

 

I was in a Celiac Support group. One of our members was an Army reserve officer on active duty. He just got diagnosed and was having a dickens of a time with rations out in the field. Everything seems to rotate around WHEAT for the U.S. Army. A lot of the MRE's are pasta based and then when they shipped in "fresh" food, it was often.....SANDWICHES. He told us about one female enlisted soldier who pressed the diet issue and received a discharge. He was bidding his time, hoping to be able to climb the chain of command and help real change happen.  I don't attend that group anymore, so I don't know how he's doing with it.

 

edited to add: I guess this falls into the beyond diagnosis into life situations category, sorry if it's posted in the wrong place.

[mamaw]

I don't  know  much  about  the military  but  in the last  several months  I have  met  men  who have  been medically discharged  because of celiac. That  makes me  angry & them  too....it  seems  the  govt  doesn't  want to be  bothered  with  people  who have celiac  they just  toss  them out...that  is  so sad.  These  men & women  love  our  country  &  many  make the ultimate  sacrifice   & the  gov't  tosses  them like  they are  nothing.....SAD....

[nvsmom]

Up in Canada, they won't let a celiac but once you are in, you are in.  If you later find out you are a celiac while already enlisted, they keep you but you may be shuffled around. I think.

[Salohcin]

Your list of symptoms that are effecting your husbund are like mirror images of mine, and I have tested positive or "borderline" for celiac disease in just one test. I too used to take Zantac thinking it was reflex. I am going to get the complete Celiac panel done - get those blood tests done asap.

[leikela]

Thanks for all of the replies. I pressed my husband and told him he needed to tell his GI to order the full panel and I have the list printed out to give to them. He called the dr office afterwards and requested the full panel and the nurse told him he would just have to ask the doctor at his next appointment and see "if he thought it was necessary."  He has his endoscopy tomorrow, so I'm going to go with him and make sure his dr orders the blood tests. I'm so so so hopeful the endoscopy will show something. He said he's done with doctors after this and will just go gluten free on his own without a formal diagnosis. But as you all mentioned the military really doesn't give much of a care of his dietary needs, so really his only chance for them to give him some leeway is with an official diagnosis. He said he'll just pack tuna on the days he has to be in the field so he can avoid eating the MREs, but you can only pack enough food for so long. That might work when he's gone for a couple days, but a week or month of training... he's not going to be able to bring enough gluten-free food for himself for those longer periods of time. Honestly, I would love if they discharged him because I know they won't offer any dietary help for him. It's way too expensive.  I fear that he'll be just prolonging the damage. 
I never had the endoscopy done, I had a full panel drawn that was unquestionably positive for celiac. Will he get his biopsy results same day? Or is it like blood work that takes days before you get your results in? He's been continuing to eat gluten, but says that today is his last day eating it regardless of what the tests show.   That's why I'm just praying we get positive tests right away! 

Thanks again for all the advice and replies! It is very much appreciated. 

[mamaw]

good luck  with the  endo . make  sure  they take  biopsies...I hope  you both  get  answers  soon... Some  doctors  can see  damage   on spot  others seem to  wait  for  biopsy  results  before telling  patient  anything...

[cyclinglady]

My endoscopy looked okay visually, but a week later my biopsy results revealed a Marsh Stage IIIB (moderate to severe villi damage). I think you just have to wait.