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Conflicting Diagnoses?
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11 posts in this topic

In march of 2004, following c/o of constipation, frequent loose stools, tummy aches and fatigue, my son was diagnosed with gluten intolerance. His bloodwork was normal except for low iron and an IgG of 117 (norm is up to 22). His doc (a family practice doc) said that very high IgG was enough to start him on a gluten-free diet.

We went for another opininion with a ped. gastroenterologist. After completing just about the same tests, he said that my son was G.I. and just put him on iron supplements for low iron. My family doc strongly disagrees with this dx and wants him to have a biopsy. I'm wondering if the biopsy comes back negative, is the IgG level enough for a G.I. diagnosis and could it indicate any other disease that might be overlooked?

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If G.I. means gluten intolerant, the daignoses are pretty much the same. Even though they are techinically different, the end result is the same: no gluten whatsoever for the rest of his life. I wouldn't worry too much about it.

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oops! I meant to say that the ped gastroenterologist said that my son was probablt not gluten intolerant.

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I keep on reading posts from moms whose kids are told by GI docs that the elevated IgG means nothing and does not support a gluten free diet. GRRR!!!

The problem with these narrow minded GI docs is that they refuse to accept or see that gluten intolerance is what causes Celiac's disease! If somone develops a gluten intolerance they should not be eating gluten. If they do it will most surely lead to one or more auto immune disorders.

My son had the same experience and without a positive endoscopy the GI would not recommend a gluten-free diet.

The tremendously high IgG level indicates that his body is currently at war with gliadin. Continued consumption will only exaccerbate the problem. His response to a gluten free diet along with the blood results would be enough in my eyes to keep him gluten-free and label him gluten intolerant.

Priscilla

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Did your son go gluten-free and if so, did he start improving? If the answer is yes, then I think you have your answer.

richard

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Gigimom: I agree with Richard. -- Many, many years before my husband was diagnosed as having Celiac Disease, he was misdiagnosed by no less than 4 gastroenterologists as having IBS or colitis. My point is, just because the person has a medical degree it doesn't mean that they are always correct. Heck, we ran into 4 of them! Sometimes professional jealousy takes over, especially when the Primary care doctor is correct then the specialist tries to countermand their diagnosis due to it, and sometimes vice versa.

After the specialist pronounced my husband last Autumn as celiac, his primary care doctor expresed skepticism and said the blood tests were in his opinion inconclusive. Well, the gluten free diet proved the gastro correct.

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:blink: I think many of us here on the board have had similar circumstances with our doctors. First off, I respect the education that it takes to become a bonified physician but to swallow one's pride and admit that "I don't have all the answers and I am still learning" (sometimes from my patients) is indicative to a great doctor!

When I was dx'd as having Microscopic Colitis last year from biopsies from the colon my GI said that I should avoid simple carbs. He said I could eat wheat! I began my venture on the internet and investigating this syndrome. I saw how it is connected to celiac/gluten sensitivity and began to question whether wheat derived foods had an influence. It most certainly does in my case.

I have the main gene that predisposes to gluten sensitivity and celiac sprue. That was found through Enterolab testing of mouth swab dna and stool samples. I was having upper leg pain, backaches, headaches, lower left sided abdominal pain, diarrhea/constipation; these have all been significantly reduced when I took wheat out of my diet. I also stopped taking advil/ibuprophen and just use tylenol when needed.Constipation is indicative to a gluten intolerance.

I wonder how many individuals who have been dx'd with IBS are really celiac or gluten sensitive?

That is rather scary isn't it.

I am so glad that we have the internet which opens us up to education, health and healing.

Keep your stress down too~ that contributes to gut problems as well

Mary

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mary-

I think about the same thing- how many people who are diagnosed with IBS (Me, for ten years) have celiac. I saw an add for ddrugs on TV the other day to help with IBS, and I got really mad. Here is this ad, full of women running through feilds because they aren't boated anymore. How much damage can these drugs be doing to undiagnosed celiacs by masking symptoms and giving another false road to exlore before diagnosis.

After ten years of getting progressively sicker ( I am 24), Knowing what is truly going on in my body (versus the useless IBS) has changed my life. I have been gluten-free for 10 months nbow, and have started mountain bike racing! This from a girl who used to ihabit the couch!

Lib

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I just wanted to add something in the doctors' defense...my 3 year old daughter has been undergoing testing the past year for loose, foul smelling stools. We've seen two peds, two ped GI's and an allergist. She had a colonoscopy which showed colitis. Amongst many other tests, they did the celiac panel which showed elevated IgA's and IgG's, though the other two were negative. Anyway, it's possible to have elevated anti-gliadin antibodies due to the "leaky gut" effect. If you have any inflammation in the small bowel or colon, food proteins can leak out. You can then develop antibodies against the food protein circulating in the blood. Once the inflammation in the GI tract subsides, this effect should subside as well and the antibodies should decrease.

I'm not 100% convinced of my daughter's diagnosis, though the docs have been great. We are retesting her celiac panel next week to see if the numbers have decreased now that she's on anti-inflammatory meds for her colitis. (By the way, her symptoms have improved significantly.) Anyway, I just wanted to pass this bit of info along...Hope this helps some people understand a little better!

Sue

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It's been a while since I posted my first question. I just wanted to update. We did go through with the biopsy on the advise of my family doc and my son was positive for celiac disease. In the meantime, a letter came from the ped. gastroenterologist stating that my son did not have celiac disease. We decided to test my 4 year old son and his IgG was at almost the same level as my first son. What concerns me is that he had very few symptoms other than being very emotionally sensitive and slight and occasional constipation. How many other kids are out there falling through the cracks? oh yeah, another symptom that set off little alarms in my head were large cavities even though we are diligent about oral hygeine. Aren't tooth enamel deficits a symptom of celiac disease? Now we are having trouble convincing family members with symptoms to believe that they should be tested. We have no family history of the disease that anybody can recall. We are checking into the possibility of genetic testing to see where this could have come from -- this might help convince other family members.

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the link to enamel defects is fairly well known... amongst the educated dentists/doctors. ;-) you might send the biopsy results back to the doc who didn't think he was GI, just to let him know.

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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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