Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Guess I Am Joining The Undiagnosed Club
0

13 posts in this topic

After a downward spiral with my health in the last year, I have finally finished going through testing. I have had bloodwork that came back normal, my mistake for not knowing to ask for a full celiac panel which may or may not have given me an answer. The colon/endoscopy biopsies were negative for celiac. They did show chronic inflammation and ulcers in the ileum. Then, I took the pillcam. Apthous ulcers throughout the small intestines. I had gotten the results and posted here a few weeks ago because I was nervous about what they meant. Anyway, I finally had my follow-up appointment. I really expected to hear "we're going to run more tests." Wrong. They decided it was time to start treatment.

So, I guess I caught the damage "too early". I put that in quotes because I think it is ridiculous that the medical professionals have a hard time diagnosing these diseases unless the damage is prominent enough. That's how I feel about it anyway. They admitted to not knowing for sure what it was. They just said it's suspicious, and they want to treat it like crohn's. Which is a bit confusing because they said that right after saying "crohn's doesn't present like this, it's rare but not impossible." What? Are you kidding me? You don't think it looks like crohn's, but you're going to treat it like it is. What about celiac?

They have not once said that I do not have celiac. I think they don't want to say that in case they might be wrong. Kinda funny that my misery is related to when I eat gluten. I also find it funny that they are choosing the treatment option that requires expensive medicine and not the one that is strictly dietary.

Personally, I think they are wrong. Then again, I am not a doctor. I don't really want to take the meds, but I am afraid that if it is crohn's I don't want it to get worse. I am gluten free right now, and it's going well except for the beginning slip-ups that I know are just a part of the adjustment. I know it's possible that I don't have celiac, and I could just be intolerant. It just seems like everything in my life is pointing to it. It's not worth going through the misery to get the diagnoses, but I really wish I had one. I wanted to let my siblings know what to watch for and what they are at risk for. I had to tell them about celiac and crohn's and that I don't know which it is. All I know is they are the two that the GI doc was looking at.

Well, I just really needed to vent a little. Thanks for reading.

0

Share this post


Link to post
Share on other sites


Ads by Google:

That is very frustrating Megan.

You may find clarification with more time gluten free. If your symptoms continue to improve with the strict removal of gluten and return with the inevitable accidental glutening - you have your answer. Positive dietary response combined with the inflammation and ulcers of the small intestine would indicate Celiac Disease regardless of blood test results. I'm curious - did you have inflammation of the large intestine as well?

It makes sense that you would question such an unclear diagnosis. Is it possible to have another GI - maybe one that specializes in Celiac - review the tests and diagnosis?

I wish you speedy healing and hope you'll find answers to your remaining questions.

0

Share this post


Link to post
Share on other sites

Have you talked to your doctor about waiting on the Chrons meds and keeping strictly to the gluten-free diet for a couple months and then rescoping to see if the ulcers etc have resolved? Since you have had positive changes with the diet and become ill when accidentally injesting gluten you may want to consider that route.

By the way IMHO the word 'just' should never go in front of gluten intolerant. Some doctors would consider me 'just' gluten intolerant because I had false negative blood work. My sig shows what that did to me.

1

Share this post


Link to post
Share on other sites

Thanks for the supportive words. The inflammation is only in the small intestine, nothing in the colon. I think I'll check some of the dr. profiles on the clinics website and see if maybe I should make a switch if my doc doesn't work much with celiac.

0

Share this post


Link to post
Share on other sites

Good point on using the word just in front of gluten intolerant. I should stop using it because it makes it sound to other people like I'm just sort of unable to ingest it. They might take that as not being a big deal, and I could find myself getting glutened or constantly trying to explain myself.

I have a bad habit of chickening out when it comes to "challenging" doctor's orders - as many of them would see it. If I can get myself to make the phone call I will ask about tapering off the crohn's meds and trying 6 months of strict gluten free first.

0

Share this post


Link to post
Share on other sites




Megan,

I was hoping you diagnosis would be clear. I am glad though that you can be gluten free and move on. I hope you can atleast wait on the drugs and try the diet first. I am pretty sure the diet calmed inflammation in my system. Get well to you.

Diana

2

Share this post


Link to post
Share on other sites

I am thinking your cynisicm is well placed. Last I knew Crohn's was a disease of the LARGE intestine. Good luck.

0

Share this post


Link to post
Share on other sites

Every description and picture that I've read/seen about celiac disease is that ulcers aren't what celiac disease looks like. On the other hand, crohn's disease does have ulcers. Weird it's only in the small intestine, but as the doctors said, not impossible.

Another thing, since you do have ulcers in your small intestine, (a break in your intestine's barrier) it seems to me that you wouldn't be one of those people who would have a negative blood test due to the antibodies staying only in your intestine where they're produced. So the 'too early' idea that you have in regards to celiac disease seems less likely. It is of course still possible that you just run low in those antibodies in general, so they'd never be detected. If you were to go and get more tests, I would ask for that one.

If not eating gluten makes you feel better, that's all you really need to not eat gluten. And you should still be aware that gluten intolerance is still a very real, unfortunately hardly understood, health problem.

If you want to get better as fast as possible, take your crohn's meds and be gluten free. If you want more of a definitive, clear diagnoses, or at the least more of a clear-cut sypmtom cause, then only do 1 of those things for right now.

0

Share this post


Link to post
Share on other sites

According to the all knowing wiki, apthous ulcers can happen in both Crohns and celiac. So they are not only found in Crohn's patients.

http://en.wikipedia.org/wiki/Aphthous_ulcer

The exact cause of many aphthous ulcers is unknown but citrus fruits (e.g., oranges and lemons), physical trauma, emotional (more than physical) stress,[9] lack of sleep, sudden weight loss, food allergies, immune system reactions,[10] and deficiencies in vitamin B12, iron, and folic acid[11] may contribute to their development. Nicorandil and certain types of chemotherapy are also linked to aphthous ulcers.[12] One recent study showed a strong correlation with allergies to cow's milk.[13] Aphthous ulcers are a major manifestation of [url=http://en.wikipedia.org/wiki/Beh%C3%A7et%27s_disease]Beh

0

Share this post


Link to post
Share on other sites

Hi, Diana.

I was hoping you'd see my post. I've been meaning to follow up with you. I'm frustrated, but I guess it's just time to focus on healing. I wish I had an answer, so I could tell my family what to watch out for since they're at an increased risk. They now know to watch for either celiac or crohn's because they have a chance of having either.

How have you been. I hope you haven't had any more glutenings. Those are awful. I got hit a couple days ago and still have an upset stomach and huge bloating. Live and learn, right?

-megan

0

Share this post


Link to post
Share on other sites

I just remembered. At my last visit they ran one more blood test. Nobody told me what they were checking or how it related to anything. They checked my ESR which came back as 9, with <20 being normal. I assume this is saying I have no inflammatory markers or something. I don't really understand how this relates to crohn's or other diseases. Maybe someone can shed some light on this for me. What I'm seeing is that crohn's usually shows higher-than-normal ESR.

0

Share this post


Link to post
Share on other sites

Do you have a hard copy of the pathology report from the biopsies?

I do know of something that "fits" for the description here.Eosinphilic gastroentestinal disorder. Gluten can "trigger" the immune system to attack with white blood cells (eosinophils). The eosinophils are usually reserved for fighting a parasitic infection and have a spear like shaft. The eosinophils damage normal healthy tissue with a higher concentration in an area of the GI track. So this one illness has a connection to gluten and damage in the GI track (even specifically the colon).

The medical community is now making connections between eosinophilic disorders and Celiac.

If the screening was not ordered to be done, you were not "tested" for EGID. Give the doctor a call it is one last chance for a diagnoses before going gluten free. By the way, if gluten free makes you feel better, just do it. Welcome to the club!

0

Share this post


Link to post
Share on other sites

This wont help with the clarity of diagnosis, but Crohn's can happen anywhere along the digestive system not only in the large intestine. Just a FYI. My brother has it and they tested me for it to make sure I didn't have it when I got diagnosed.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,897
    • Total Posts
      919,545
  • Topics

  • Posts

    • Task Force to Make Celiac Screening Recommendations
      The U.S. Preventive Services Task Force will make screening recommendations regarding celiac disease screening after taking public comments. View the full article
    • Gluten does WHAT to the brain?
      I hear you Gemini. It's nucking futz!
    • Test Results
      I went gluten free & never looked back! I have dh, the celiac rash. That makes it pretty darn easy to go gluten-free the moment you figure it out. I was not about to continue eating gluten for even one more day just so the medical establishment would be satisfied in my dx. There was not a moment of doubt in my mind that I had dh & therefore celiac. As it turns out, weirder than weirder than weird and the odds I can't even begin to imagine.... I have since, by sheer accident, had 2 docs officially dx me. Is that crazy or what??!! I did not go in asking for a dx nor even hoping for one. Frankly, I just plain didn't care what they thought. The medical community has failed me numerous times throughout my life so I don't have the highest regard for them. You are 54, I was 54 when I figured mine out. I have no kids so did not need to consider them in my decision not to go for an official dx. My parents had already passed away so that was not an issue. My brother had passed away so that was not an issue either. I did contact my nephew & tell him to let my sister know so she could get tested. So I have done my duty by her & she's an adult and a nurse & can make her own decisions. I do urge people to go for an official dx whenever possible, especially when they have kids or other 1st degree family members. If it's doable for them I think they should make a good effort at it. Also, there are certain people who express they don't think they can stick to the diet without the official dx. I think those people should pursue a dx with all their might. I have never had the slightest problem sticking religiously to gluten free eating. I have never doubted myself. I know you have tired HARD! Super, super HARD. I commend you for your dogged pursuit. I would not, could not blame you for giving it all up & just going gluten free this instant. That is a choice only you can make but I fully support whatever decision you make.
    • Gluten does WHAT to the brain?
      Your brother sounds like mine, Squirmy.  He was a Type 1 diabetic and had flaming celiac symptoms to boot but his docs always, always blamed his diabetes on everything.  He lived in the country and the docs in his state just were so far from being Celiac savvy.  I doubt they ever diagnosed one. His health was failing so badly that in the end, with the 3 MONTHS of non-stop diarrhea going on, he became so dehydrated that he had a heart attack and died last August 4th. His biggest mistake was trusting these idiots completely.  I think his brain was so messed up and confused that he just couldn't understand what I was trying to tell him.......that good ole brain fog.  He did what celiac's may do when left untreated for years and years.....they slowly fail and then die.  It still is extremely painful for me to think about because I was close to him.  I still see many people in my life that I think have it because of their extreme symptoms. Listening to them complain that the doctors aren't helping them. Try suing them for malpractice too......it would be too hard to prove. And then we have those who know there is something very wrong but won't give up wheat bread because that is unfathomable to them.  This disease can drive anyone crazy, for many different reasons. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,946
    • Most Online
      1,763

    Newest Member
    Chris O
    Joined