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Very Confused
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5 posts in this topic

Hi,

First off, my name is Jessie and I just found the website tonight. I am very confused! I have a 21 month old son who has had serious health issues for about the last year. Starting with Upper Respitory infections, horrible diahhrea, 2 bouts of pneumonia, Benign Transient Hyperphosphatasemia, IgA deficient, IgG too active, etc etc etc. About a month ago he developed an AMAZING appetite. He eats more than his daddy! He looked like he was getting skinnier to me so on Friday we went and had him weighed. His growth had started to slow down when he started getting sick but he hasn't grown any longer or gained any weight since October. We are running stool cultures and have a followup appointment with his Ped to discuss those results and what might be going on.

I work at a medical clinic and one of my nurse practitioners suggested Celiac to me. After reading a little bit about it, it just sounds like Joshwa. EVERYTHING sounds like him. My BIL has Chrone's disease so is that a first degree relative?

My poor baby has had so much testing done in his life that he cries when someone comes at him with a stethoscope. I don't think that we're willing to do a biopsy at this point. Does anyone have any suggestions for non-invasive testing?

If you've read this far, thank you. I appreciate any help that you could throw my way. I promise that I won't be this long winded all the time! :rolleyes:

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There are stool tests avaiable. They are through enterolab and you can get information on them at their website. www.enterolab.com

There is always a celiac blood panel.

My son just had an endoscopy and biopsy done but not the blood test. The problem is that the biopsy can miss a spot of damage as it can be spotty..

The tests from enterolab are not generally accepted by most doctors out there as they are relatively new. But Dr. Fine is celiac and has pretty much dedicated his professional energies to helping those with celiac, and those who think that they have it..

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I've used Enterolab, and think very highly of them. We took my now nine month old grandson off milk after he had diarrhea, stomach cramps, severe diaper rash, and lots of distress. I am gluten sensitive and allergic to milk and dairy, and I sent for the full spectrum stool test from Dr. Fine ($368) and learned that our grandson is also gluten sensitive and allergic to milk and dairy. He has only eaten grains and milk by accident, and the consequences were so awful--crying, fussiness, inability to sleep, stomach distress, etc. for three days. He is now growing normally and is such a wonderfully happy little boy. I highly recommend the Enterolab test kit. At Christmas I gave the simple gluten sensitivity test kit to my husband, brother, sister, and three grown children ($118 each with 10% off each kit after the first) and we have since learned that my husband and brother are NOT gluten sensitive--yay! Theirs didn't test milk or dairy or if they carry the gene, as did my grandson's. We are daily becoming more aware of how to live with Celiac. I hope that you, too, find relief soon. My heart goes out to your little boy and you all. Welda

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Hi Welda in reading your post you talk about the enterolab and testing that they do. My Lily's GI doctor told me that there isn't a test to test for dairy protein defifiencies is this not true? I'm just curious? We eliminated her dairy and Lily has maintained a low iron level but it hasn't dropped to transfusion level so he said going by the process of elimination he was pretty sure that was the cause. Then she was sent for the celiac blood panel which came out positive GI doctor told me that it also can come out possitive if there is a dairy issue. I found this to be inconsistent and thought perhaps you had some knowledge of this?

Heather

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Heather, Try reading the article on Dr. Fines testing on Celiac.com. Many doctors seem to be resistent to his testing. But it seems Italian researchers are taking his testing very seriously. The article is "Italian Researchers Develop Ultra-Sensitive Intestinal Anti-Tissue Transglutaminase Celiac Disease Screening Technique. Many-many Celiacs do develop a problem with dairy products. But many of us also heal and can eventually use dair products. I did have to eliminate them for about 6 months. Now, after several years, I can use most dairy products, except to drink cow's milk. I use goat milk without a problem. But if you have a problem with caseine, then you should eliminate dairy altogether. That seems to be what Dr. Fine tests for.

Welda, Try reading the above article. Sounds like a really good start to early diagnosis. Shirley

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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
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