Aussiemum

On 06/10/2017 at 11:01 PM, squirmingitch said:

Thanks for updating us. Yay for the referral to the pet GI that the celiac society suggested!

Please continue to keep us updated. 

Hi just thought I'd update where we are at. Firstly whilst waiting for the GI follow up appointment I took my daughter to a paediatric dietitian who said even if biopsies are normal do you want to  sit back and watch her get worse while you wait for her to show damage. So we started her on gluten free after a week her fatigue started to lift. GI appointment scope results and biopsy negative told him about gluten free he said he happy for her to be gluten free as she probably gluten intolerant. He wants her to stop her iron in 4 weeks wait 4 weeks then retest as well as allergy test for wheat egg soy and dairy.  I should ad that her dgp igg bloods were positive again at time of scope but he said they were probably caused by possible allergy and that they were improving the results were 11,10,9 so still no definite answers but with positive bloods positive gene and positive symptom response to gluten free  I think that is what we have to do and she isn't happy about it lol???

Well endoscopy done this morning. Said that all looked normal no sign of celiac seen normal duodenal cap and preserved villi. but need to wait for biopsies. Report stated  mild antral gastritis with erythema found  but non specific. Seems like they took a lot of Biopsies. Report stated they took them from lower 3rd and middle 3rd of oesophagus,  the antrum of stomach and area in bulb and 1st,2nd and 3rd part of duodenum. So will wait and see two other children in recovery with us had visible damage on their scope so were told they have celiac disease. Dr review clinic not for two weeks. Thanks for everyone for listening we just want some answers now for her increasing fatigue. But maybe it's not celiac after all. 

My daughter is having her scope on Tue he said it could still be normal as her bloods even though positive they weren't highly positive. But due to the fact of her on going fatigue even with iron supplements her positive gene test and her dad being a type one diabetic he thinks it's best that he does the scope. Should I start gluten free trial straight after the scope as we can't get back in for results for two weeks and I feel her fatigue is getting worse and we were thinking of trialing gluten free even if scope is negative any thoughts

Finally got the results of the gene test today. She came back positive to DQ2 so our GP has sent a referal to a another paediatric gastro for us to take her to. This paed was also the same paed that the coeliac society suggested we see after I contacted them after the bad experience I had with the first gastro I was referred to.

Was back getting yet another blood test today as the person who took the gene test used the wrong tubes???luckily I could bribe her enough to get it done again this time thankfully with the blood lady that usually does her bloods and who does it correctly. She also said it will take two weeks to get result. 

On 06/09/2017 at 1:26 PM, Celiac's Wifey said:

Hi Aussiemom - 

 

First up, I'm sorry your daughter is sick. I know that sucks.

My daughter had a high test result on the Deamidated Gliadin IgG test (in U.S. called DGP-IgG) and was negative on TTG-IgA with total IgA serum being normal. We have a really strong family history of celiac disease, so we were on watch. Our daughter was given an endoscopy because of the strong family history,  and the high blood test, plus atypical symptoms. The scope didn't find anything.

We were then told by the pediatric gastroenterologist that the blood test 'might be a false positive or it might be meaningless.' So we sat on that information for almost five months. In those five months I watched my daughter get sicker and develop other autoimmune complications - worsening rashes, pain, worsening bowel symptoms, loss of pigment on her torso, and ultimately the beginnings of impaired thyroid function. I kept searching for answers, reading more, and realizing how incredibly complicated celiac diagnosis can be. Some of the best experts in the world describe the disease as a chameleon -- it can affect any system and hide in surprising ways. In a different post on this forum I read someone describe it as "my celiac disease doesn't look like your celiac disease." This is borne out in my husband's family too -- he, his sis, and his dad are all diagnosed. They all had major symptoms that cleared on a gluten free diet and the craziest part is that between these three closely related individuals they had almost no overlapping symptoms. (Between them they also have multiple other AI diseases and complications - hashimoto's thyroiditis, dermatitis herpetiformis, psoriasis, diabetes, joint issues and skin carcinomas)

For our daughter, we eventually retested. Same results. High DGP-IgG, TTG-IgA normal. In our daughters case, it absolutely wasn't a false positive, and we absolutely couldn't ignore the result.  

I have asked two different doctors at a major celiac center in the United States what a high DGP-IgG result along with symptoms means, and it has become clear to me that even the experts at the center I went to could not provide clear answers. They know the DGP-IgG test is better for catching early celiac in pediatric patients under three, but they don't know seem to know what to do with the test results for older kids. This is a disease where the science absolutely isn't where it needs to be for proper diagnosis.

I am not a doctor, and I know there is much I don't know, but my basic understanding of the science is this -- 

If your daughter's body is making an abnormally high number of antibodies against deamidated gliadin (one of the protein molecules in wheat gluten) then her immune system is recognizing gliadin as an antigen -- a toxin. Now maybe her body can keep reacting with a hypersensitivity to gliadin indefinitely.... or maybe her body has reached a tipping point, where her hypersensitivity to gliadin has stressed out her immune system, and a stressed out immune system is going to make her sick in one way or another.

When we got our second high test result, we put our daughter on a gluten free diet immediately. The second doctor agreed this was the right step. We are currently checking if she will have a positive response to the gluten free diet. We hope she will. 

In all my reading, two things I found the most helpful were the many kind and informative posts and posters on this site, and reading the research of Doctor Alessio Fasano (a leading U.S. researcher on causes in the U.S). who speaks more about the types of other symptoms/reasons/and possible autoimmune effects than others - this seemed closer to what we were seeing in our family. I'll include a link here to an interview series he did on a blog because I found it really readable -- but if you prefer to read his actual published medical papers they are also easy to find online. The link is to old interviews, but you can follow through to more recent interviews at the site if you find it helpful.

http://www.tenderfoodie.com/blog/2011/12/19/interview-w-dr-alessio-fasano-part-1-should-anyone-eat-glute.html

Two last thoughts -- from what I can tell, false positives on that test are extremely rare - estimated between 1-3% - and that would possible describe only an equivocal or borderline positive (say a 21 when 0-19 is the normal reference range) - not a strong positive result. Your daughters body is reacting to gliadin in an atypical way, and that is suspicious. And -- maybe ask your diabetic husband to do a full celiac panel. My diabetic father-in-law caught his celiac disease late -- he claimed he had no symptoms (silent presentation) which can happen -- or maybe he chalked some symptoms up to management of his diabetes -- which he knew about. Either way, it is so much better for his health that he is on the gluten-free diet now. My husband's diabetic + celiac first cousin also found the diabetes first and the celiac later, but her doctors feel certain that the celiacs preexisted the diabetes.  In the med lit its pretty clear that some presentations of diabetes and celiacs really like to hang out together.

 

I hope you find some answers and see your daughter's health improving soon. 

Thanks we went back to our usual GP as he wasn't the one who ordered the initial blood test and wasn't the one who sent us to the specialist. He said that we will redo coeliac screen and also do the gene test. He also gave me forms for my partner to go and have screening done too. We have had the testing done just waiting for the results does anyone know how long the gene test takes. We are really hoping that is was a false positive and her symptoms are just from her iron deficiency. So in the mean time we have started her on iron supplements and keeping everything crossed.

8 hours ago, Ennis_TX said:

Did they perform a endoscope and biopsy? The standard is to perform a endoscope while consuming gluten prior, and checking for damage to the villi via biopsy under a microscope. The blood test can be iffy with some people and even the endoscope on rare occasions can miss it as the surface area of the intestines is quite large.   As mentioned you have to be consuming at least half a slice of bread worth of gluten a day for 12 weeks for the blood test 2 weeks I think for the endoscope. Some suggest more like 1-2 slices worth of gluten.

As to the iron, if you want to improve iron absorption look into a vitamin C supplement in addition as vitamin C facilitates iron absorption. You might want to have everything else checked also. Common issues that cause sore muscles and GI issues are also nutrient deficiency related, Magnesium, all b-vitamins, folate, etc. are common ones. I personally still have to supplement in large amounts even years after some healing. Depending on her GI issues, I would suggest 1 of 2 brands of magnesium that can be mixed in a drink. If she has constipation like issues Magnesium Calm starting off at 1/4 tsp dose and slowly work up over a week or so. If she has D issues then doctors best which is easier on the stomach and is also powdered and mixed in a drink so no pills. just mix it in juice. As to vitamins look at Liquid Health and pick the product that best suits her needs great company gluten-free, and the stuff is liquid so you add it to a drink no pills.

EVEN if she comes back negative for celiac, Non Celiac Gluten Sensitivity (NCGS) is a real issues that can have very similar issues, and can not be diagnosed with testing. In which case trying the gluten-free diet for a few months to see how she does is the only real test.

I am going to suggest keeping a food diary, write down EVERYTHING she eats and how it is fixed, seasonings, spray oils, condiments, brands etc. Record how she feels or anything you notice hours after food consumption. Try rotating the diet, using different foods as unprocessed as possible, different seasonings, cooking methods etc. Now look for patterns, and see what food make her feel worse.

 

That's the frustrating part the dr said she wouldn't do a scope based on her blood results!!

Hi I have a 11 year old daughter who has had severe fatigue for several months. GP did blood test which showed that she was positive to deaminated gliadin Igg but negative to h-tTG iga and iga normal range 1.89 (.74-2.28) 

Her iron studies were normal except her TRF saturation was low 15% (16-45)

she has the occasional GI symptoms sore muscles and mouth ulcers however nothing significant. Her dad is a type 1 diabetic.

we saw a paediatric gastro today who said that the coeliac test was false positive and that she is iron deficient and needs a iron infusion  she also stated we will need to work out cause of iron deficiency as it can be a malabsorption problem!!!!

none of it makes sense as her iron levels appear mostly normal. 

feeling confused.