Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Missed Diagnosis?

4 posts in this topic

This is my first post here, but I've learned so much by reading here over the past month or so.

My 7yo son was diagnosed via endoscopy last year with a slight gluten sensitivity that was causing acid reflux. Up until that point, I hadn't really given gluten much thought, but we decided the whole family should go gluten free to support my son. At that point, problems that had plagued me my whole life cleared up, including bloating, constipation, and joint pain. I followed a 95% gluten-free diet since last October. I would eat breading on chicken, restaurant french fries, etc with no problem, other than some bloating for an hour or two. Then over the last 8 months, my symptoms started to get much worse whenever I would consume small amounts of gluten. It progressed to stomach cramps, itching on my torso, and a "punched in the gut" feeling. Also, I started reacting to much smaller amounts of gluten than I did previously. When I mentioned this to my son's pediatric GI doc a few weeks ago, he strongly encouraged me to get tested for celiac. Knowing that i have the disease will impact my son's treatment and prognosis for the future.

However, the adult doc I was referred to doesn't seem to be as knowledgeable about celiac and gluten issues. Even though i have been mostly gluten free for over a year, she didn't agree that we should do a prolonged gluten challenge before testing. Instead, she wanted to test as soon as possible, and scheduled my endo 8 days into my gluten challenge (I should be grateful, as that 8 days were the sickest I can ever remember being).

Here were my symptoms for the 8 Day Gluten Challenge:

  • bloating
  • "soft poop" & cramps
  • stomach ache
  • flu-like muscle and joint stiffness
  • sore fingers
  • acne
  • itchy skin
  • fatigue/"brain fog"
  • nagging headache
  • Hunger

So, my bloodwork (drawn 7 days into the challenge) was normal (IgG=<.4, IgA=1.0, TTG=.4, EMA IgA=negative, total serum IGA= 222), and the biopsies (she took 5 from stomach and 4 from duodenum) were normal with the exception of "minimal inflammation consistent with a phase of acute erosive gastritis). No damaged villi found = NO CELIAC!

While I should be happy, I can't help feeling like this isn't accurate. I am a little angry at myself for not advocating more strongly for a longer gluten challenge than 8 days. I have read how hard it is to diagnose celiac disease under normal conditions, but after a year mostly gluten free, I have no confidence that 8 days was enough.

I know it shouldn't matter if I have a diagnosis or not, because given the way I felt for those 8 days, I will never knowingly ingest gluten again. However, I wanted a specific "label" on my symptoms, so I would have a response ready when well-meaning but clueless friends and family push gluten on me. ("Oh, you and your fad diet!" or "A little bit won't kill you." Umm...yes, yes it will.). Also, if I definitively DON"T have it, then I know i don't need to worry about contaminated fryers, lipsticks, etc. After all, I don't outwardly react from those things and if it's just a simple intolerance, then no harm done. But if I don't react outwardly, but do have celiac, then the potential from harm is much greater.

My next step might be a gene test from enterolabs, but I can't decide if it's worth the money. Pros: we would know if my son has the celiac gene, I would know that I have to be SUPER anal about gluten cross contamination, etc. Cons: Cost

Sorry for rambling. If you have any thoughts and opinions on my situation, i'd love to hear them. i guess my basic question now is: what next? How gluten intolerant am i, really?! What do I say to others who don't understand how I can get so sick from gluten but get a negative diagnosis? (See, it's all in your head).


Share this post

Link to post
Share on other sites

Ads by Google:

imo 8 days is no where near enough even for someone who has been gluten light. Its a very big possibility that your tests were false negatives.

Get the genetic test. Not only will it help you and your son, but also any close related family members (parents and siblings).


Share this post

Link to post
Share on other sites

Your son got his celiac genes from either you or his father. Since you have serious Celiac Disease symptoms that improve when gluten-free - my guess is they came from you.

Your intestine has most likely healed from your efforts which is very good news. That the brief gluten challenge was hell together with inflammation in the digestive track and a child with Celiac Disease is enough info to confirm you need to remain gluten free.

It is no one's business what necessitates the need for you to be gluten-free. Simply say you can never ingest gluten again. Doing so will cause numerous serious health problems.

Tighten up your gluten-free diet and I would guess the inflammation will continue to reverse and your health will continue to improve.

If you still find you need a diagnosis - do another challlenge down the road - minimum of 6 weeks.

I'd guess as your health improves it will become easier too simply state I need to be completely gluten-free and not worry about what others think. Also, as time passes family and friends will likely see improvements in you as well and will realize this is not a passing phase for you and your son - it is the only way to stay healthy.

Hang in there :)


Share this post

Link to post
Share on other sites

I think from your description that you most probably have celiac....and it's no one's business how you came to know that. Simply tell people that you have celiac. That's that. They don't need to know the particulars. The challenge wasn't long enough for positive tests, so you will need to accept that you have celiac but cannot definitely prove it; however, you know with quite a bit of certainty that that is exactly what you have. Who is going to challenge you on this?

As for the gene test, if it will give you peace of mind, then do it. However, since 30-40% of the population carries the genes, it doesn't prove much. However, again, if it makes you feel better in order to tell people you have celiac, then perhaps it would be a good idea down the road when you feel like spending the money.

After I figured out for myself that I had celiac (I had a classic case) at the age of 47 and adopted a gluten-free diet immediately, the gastro I was referred to apologized profusely after going through my extensive medical file. He said that if I had been referred to him 30 years before, he would have made a diagnose strictly based on the symptoms. It was too late for a blood test since I'd been gluten free for six months, but he said he was 99.9% positive I had it. I did have my son tested for celiac, and he tested positive. That was clearly enough evidence for me, and, without any qualms, I tell people that I have celiac. They also have witnessed how extremely ill I become if I accidentally ingest even the smallest amount of gluten. The medical means we currently have for testing for celiac aren't perfect, so, please, feel free to say that you have celiac. It harms no one...and will make others more careful when it comes to dining with you.


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • They didn't. The labs were run two and a half weeks ago and before I got confirmation on here that it should be done despite my drs saying otherwise. I was glutened the week prior anyway so it would've been high regardless.  It's all very frustrating. So I guess I'll wait five or six months and go back and demand it vs asking about it. 
    • Did they run a DGP IGA?  While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend.  I am not making that up.  Google it.   My DGP was off the charts when I was glutened last summer.  My symtoms were severe, yet at diagnosis, I just had anemia.  It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy).  What I am saying is that symptoms for celiac disease can change.    
    • Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 
    • Hi Carle, Congrats on your symptoms going away.  I did seem to have reactions to rice for a while after going gluten-free.  But after some years on the gluten-free diet I can eat it again.  So reactions can change over time. I was searching for an article on gluten in common store products, but didn't find it.  There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally.  But they found some level of gluten in some of them.  So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated.  That may have happened with the rice you ate.  A quick rinse of water before using the rice might help.
    • Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease).  Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing.  The blood test is supposed to preceded by 12 weeks of daily gluten eating.  That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged.  People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests.  My theory is possibly because the antibodies are concentrated in the skin instead of the blood.  In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood.  After some time they show up in the blood also.  The thinking is the antibodies go where the work is.  Anyway, theories aside, it takes very little gluten to kick off an immune response.  Those antibodies are not aimless soldiers.  They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms.  Did you know there are some people who have no GI symptoms of celiac disease but still have it?  They call that silent celiac.  So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results.  Have your close family members been tested for celiac disease?  It sounds like they should be.   There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member