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Missed Diagnosis?
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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).

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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).

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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 :)

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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.

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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