Blood Test Show High Inflammation Pre-Diagnosis?

[AGH2010]

Hi everyone,

Today I took my daughter to her 3rd GI in 2 months (for various reasons, such as insurance, we've had to look around). Her first GI did a celiac panel and a bunch of other blood tests when she found out my 2 year old has been constipated her whole life. Her EMA test came back positive and she also had a very high ESR (aka sed rate) so she has some sort of inflammation going on in her body. I have read that celiacs can have very high inflammation rates.

Well, today's doctor started out by saying he was very surprised the first doctor had ordered a celiac panel for just constipation and said he would not have - even though my daughter's came out positive! He also said he didn't think the inflammation had any correlation with celiac.

I'm not sure I trust this particular GI's knowledge of celiac and am tempted to return to my first one even though she is out of network and will cost us a fortune. But even the first GI said she did not think celiac could explain my daughter's sed rate.

I thought I might be able to find out more by asking you all to see if anyone's child also had a high rate of inflammation before they were diagnosed with celiac. (For anyone with actual #s, my daughter's ESR was 28 during the first blood test and 31 at her second blood).

Thank you!!!

[Mom2J112903]

Inflammation and high sed rate in combination with constipation would lead me to look more at IBDs instead of or in addition to Celiac.

Also look at EoS disorders as well.

[Mom-of-Two]

Did she have the test for ttg? I would insist on that.

[AGH2010]

Did she have the test for ttg? I would insist on that.

Yes, she had ttg tested as well. Her #s fell under the cut-off for it being positive but I'm told that's not too surprising given how young she is.

The GI we saw yesterday is an expert in IBD. When I asked him if the inflammation could be caused by IBD, he said it's very rare at her age and that she would be presenting with a lot more symptoms, not just constipation.

I don't know anything about EoEs so didn't know to ask.

[mushroom]

May I make a somewhat wry observation here? Most of us have had to spend our medical lives avoiding the IBS/IBD doctors who wouldn't know celiac disease if they tripped over it. Maybe your "expert" yesterday learned something new, that celiac patients can present with constipation as well as diarrhea (or maybe he didn't ) My personal feeling is that your daughter would be better off with a doctor who was a little more knowledgeable about celiac disease.

ESR is just a measure of the existence of inflammation in the body. It is entirely non-specific as to causation. And yes, celiac does indeed cause inflammation. My ESR was through the roof, but that was mostly because by then I had developed psoriatic arthritis, another autoimmune inflammatory disease, secondary to the celiac and the ESR did not come down a lot until we got that under control.

I assume your daughter is now gluten free. How is she doing on the diet?

[Mom2J112903]

FWIW my son is IBS and Celiac and still throwing an IBD around instead of.IBS.

[MitziG]

Your new GI is ignorant. Constipation is extremely common in celiacs. And EMA is very specific...she has celiac disease.

Now...is that ALL that is going on? I can't say. I would recommend you return to your more knowledgeable GI and request an endoscopy.

[Gemini]

Your new GI is ignorant. Constipation is extremely common in celiacs. And EMA is very specific...she has celiac disease.

Now...is that ALL that is going on? I can't say. I would recommend you return to your more knowledgeable GI and request an endoscopy.

Totally and utterly agree with you on this!!!!! I thought I would never be surprised again at what I hear on this forum but its happened!

As others have stated, sed rate can be extremely high from Celiac. When I was diagnosed, all my inflammatory markers were sky high, including this one.

They have all come down since going gluten-free. Also, EMA is highly specific for Celiac and if someone tests positive on that one, (I did), they have Celiac and an endoscopy isn't even needed....unless you want to put your child through this test to keep the AMA happy. Honestly, is there any other disease that makes people jump through so many hoops? Unbelievable!

The fact that the tTg was not tripped could very well be because she is so young and has not sustained enough damage to elevate the numbers. I have a great nephew who I know has Celiac. He has failure to thrive and is extremely small for his age. He has multiple medical issues, all related to Celiac, yet his parents will not put him on a gluten-free diet because the doctors refuse to say he has it. And why is that? He does not trip the blood work. They even did an endo on him at the age of 2 and his duodenum was all inflamed but there was no scalloping yet. The dumb-ass doctor told them he doesn't have Celiac. This child is the victim of medical malpractice....do not let this happen to your daughter. They wait until you are very sick to diagnose and most of the reason is liability issues. I nearly died from this disease so please believe the people on this board when they tell you your child is Celiac!

Good luck to you and your daughter....

[AGH2010]

Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR.

I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally would be so ignorant about celiac.

Since my daughter is only 2, I really would like to skip the endoscopy if possible and just put her on a gluten-free diet and see if it brings down the inflammation and gets her to a negative EMA. But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

I think I'm going to take her to the pediatric celiac clinic in San Diego next (we live in Los Angeles). I would love to be seen by someone knowledgeable. Never thought I'd be running around to so many doctors for something not that unique or obscure.

I do hope yesterday's doctor will think twice before dismissing the possibility that someone with just constipation could have celiac,

[Gemini]

I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally would be so ignorant about celiac.

There is no money to be made form Celiac Disease. Once you follow a gluten-free diet and healing occurs, you don't really need them so much. Health can be achieved through diet and we all know they don't go there. If most of America ate what they should and avoided the foods that made them ill, doctors would have half empty appointment books!

Since my daughter is only 2, I really would like to skip the endoscopy if possible and just put her on a gluten-free diet and see if it brings down the inflammation and gets her to a negative EMA. But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

Yeah...I heard that speech also and blew them off. I had all positives on my blood work and seeing as I was down to 97 pounds, I knew what I had to do without subjecting myself to a test that would confirm the obvious. There are valid reasons to do scoping tests but if someone has positive blood work and symptoms resolve on the gluten-free diet, then why put yourself through that? I would also resist doing one on a small child, unless really medically necessary, but that's just me. Invasive tests have risks, which need to be carefully thought about.

I think I'm going to take her to the pediatric celiac clinic in San Diego next (we live in Los Angeles). I would love to be seen by someone knowledgeable. Never thought I'd be running around to so many doctors for something not that unique or obscure.

I do hope yesterday's doctor will think twice before dismissing the possibility that someone with just constipation could have celiac,

Oh...he will! Constipation is rarely seen as a symptom of Celiac. It's all about the diarrhea!

Hope you have better luck with the next doctor. Please post for others if you come across a good one!

[1974girl]

My dd had the EMA and biopsy said "simplification" found only in one spot. But she has it. My husband is type 1 diabetic and they tell me this might help prevent that from triggering. She already has low thyroid. Go gluten free and hopefully save her from other worse auto immune diseases. If insurance will pay for a 2 nd opinion the. Have the blood work run again. That might make you feel better about going gluten-free.

[beachbirdie]

Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR.

But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

Cruel to have her gluten-free? I'm dumbfounded. What on earth is cruel about a gluten-free diet? I can't believe they said that! I would be running as fast as I could from THAT loser doctor!

If you ask me, it is cruel (malpractice, even) to keep a person with celiac on a gluten diet for the purpose of creating the damage they want to see before a diagnosis. Far better, in my mind, to catch it early.

[justlisa]

Beachbirdie...you read my mind! I think from what I've learned that the way that the medical community "confirms" celiac (by forcing people to put what is essentially POISON to them in their bodies) is CRAZY!!! There has to be progress in this area...has to...

Not to mention that these tests have a high rate (30%???) of being false negative... Boggles the mind!

Don't even get me started on that! It appears, more often than not, that this is determined by naturopaths, homeopaths or self dx... Way way way under-diagnosed imo...