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Just Found Out Through Bloodwork
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Greetings: I just found out through bloodwork that my 14 month old is suspected of having Celiac Disease, but they suggested a biopsy to confirm. This bloodworked was ordered because of her lack of weight gain. She is 16.5 lbs. My wife and I thought her lack of weight gain might be attributable to her previously diagnosed allergy to Milk. We have had her dairy free for the past two months already and we had introduced Rice Dream (which I now find out is not Gluten free).

I have a number of questions that I cannot find answers to.

Could the previously diagnosed "dairy allergy" be related to Celiac Disease?

At 14 months could considerbale damage have been done to the intestines already? She was breast fed for the first 12 months.

If we are to have the biopsy, should we hold off on the gluten-free diet?

How is EnteroLab different?

If we are to put her through tests, I want to do it only once, and do it properly. I of course, want the most accurate and specific testing that is recommended, but opinions seem to vary. Can anyone advise or educate me?

With Gratitude for your help,

John

Jstillwell@tiac.net

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Welcome. I'm sorry you have to be here, but glad that you've found a possible answer to helping her get better!

She should not go off gluten until you decide all testing is done, but you may want to talk with a well-educated ped. GI about whether or not a child so young will likely show damage on a biopsy even if she is celiac. The milk issue could be related - particularly if it's a lactose problem.

Enterolabs uses a stool test that is not (yet) peer reviewed and accepted by the majority of mainstream doctors. That doesn't mean it's not correct, but it may or may not be what you need in this situation.

Also, don't forget that a positive result on the diet is a test in and of itself, and shouldn't be overlooked.

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Tiffany:

Thank you for your response. I guess I am unsure which route to go with testing. I just want the most specific and definitive diagnosis that I can get for her, and I am still unsure how to go about that as there seem to be many different blood/stool tests as well as the biopsy option. THis is my biggest area of confusion.

I am also hopeful that the diet will help her, but other than the lack ofweight gain, I would not have known she had the problem. How will I know if the diet is helpful?

Thanks,

John

jstillwell@tiac.net

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I'm pretty certain that Entrolab tests can't diagnose celiac; they show gluten sensitivity or intolerance. If she's had positive celiac blood tests you pretty already much know she's at least intolerant.

richard

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To add to what Richard said, if she's intolerant, she needs to be on a gluten free diet to prevent more damage if there already is some or any damage or other complications associated with gluten intolerance. If you get the biopsy done and the doctor does happen to find a damaged spot in her intestines, the end result will still be that she'll need to be on a gluten free diet.

I didn't bother getting my children biopsied since there is a family history of celiac disease and all tested intolerant (though just barely.) All of them have shown great improvement on the gluten-free diet, too. But whatever you decide is definitely a personal choice, one you need to be comfortable with in the long run (even if it's difficult to make.)

Good luck!

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We recently experienced a portion of your experiences with our twin daughters who turned 4 in December, three days after a diagnosis.

For us, our one daugther was VERY sick, failure to thrive, etc. All the dr.'s thought anemia but the bloodwork came back positive, very positive antibodies to gliadin. In our situation, with her being as sick as she was (she was on the verge of being admitted to the hospital), we did the biopsy. I was very nervous about the entire thing but after the procedure, they gave her a popsicle and by the time she was wheeled in to see us, we saw a smiling popsicle face! Her biopsy showed significant damage (more than expected for a preschooler). Of course we went gluten-free at that point. I noticed others went gluten-free after the bloodwork choosing not to do the biopsy. Our physician also gave us a letter which we keep on file and will use it (unfortunately who wants to use it) for tax purposes (writing off the expenses of the doctors, extra costs of food etc.). Her twin came up positive on the bloodwork and for her we decided to not do the biopsy as we knew what was sure to follow.

I was recently bloodtested and had an endoscopy for my own GI issues and came up negative on all tests. However, sometime down the road, we will use Enterlab to test the daughter who didn't have the biopsy as well as my husband. Basically, I'd like to be able to tell that daughter down the road whether she is carrying both genes for Celiac, etc. We also had both children allergy tested (rough) as well as tested through blood for a wide variety of intolerances/antibodies.

Sorry for the babbling. My children were breastfed as well and I wondered myself whether anything was passed through. My understanding is that damage can begin as soon as solid foods containing gluten are introduced.

Again, sorry for being long winded!

Christine

PS. We were told that as a result of the damage to the intestines from the gluten, that the villi or such is effected in the way it processes the lactose as well creating a lactose intolerance. After she went gluten-free, we also didn't give her dairy for a short time. She's back on the milk and gained 2 pounds in 3 weeks! Amazing how your daughter will heal!

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My son tested postive for celiac with the blood test. Also tested positve on the bowel movement. My son was also breast fed. He will only eat a couple of bits or a couple of sips of drink. He has a feeding tube in his stomach. He is 2 years and weighs 21 pds. We are in the hospital every three months for more tests. Celiac can come in two's (something else wrong) I did the mistake of not giving him gluten, before he had the biopsy and it came out negative. When he was a baby I was told he was a colicy baby or he always has a stomach virse.

He is Gluten free now and still has problems with vomiting and bowelment problems. I was in the doc office once a week and now I have a nurse come to my house for 37 hrs a week. I feel every one sititation is different. Just handle it when it comes to you and pray. Take Care and God Bless.

Check out my son and sign our guest book and I will keep you updated on what the docs do to my son. www.caringbridge.org/co/zack

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John,

I am sure you know already, but the people on here are amazing, and have a great wealth of information to share! Sometimes I feel that getting an answer on here means more than talking to my daughter's GI Doc! I just wanted to welcome you! We joined (reluctantly) 5 months ago, and I remember it to be a very scary time for us. My daughter was "wasting away", and her tests came back extremely high, but we still opted for the biopsy (a VERY hard decision). I am glad we did, because she is doing so great today, that if I didn't get the biopsy done, I think I would always wonder if this is really what she has (denial). But, since we got the test, and Celiac was conformed, she is living a healthy diet being "gluten free". I wish the best for you! Good Luck!

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
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