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Diagnosing An Infant
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My son was born in June of last year and he seemed normal at birth. After the second month we had a terrible bout of thrush that was treated with antibiotics and antifungals for both of us. After the treatment my son started having stomach distension, horrible foul smelling mucus stools and diarrhea  screaming fits, heartburn and red spots on his skin. This continued to worsen until he was awake around the clock with screaming, having to be held upright, swelling so large his stomach wouldn't fit in pants, and constant mucousy stools that were so foul my husband and I threw up once changing him. His skin went from small red spots to larger boil like lesions that he constantly itched at. He also was getting covered in cradle cap. We took him to the doctor almost every week and they said it was colic/reflux/or possible FPIES. We continued an elimination diet (breastfeeding) until we removed all dairy, soy and soy derivatives  and gluten. The gluten removal made a HUGE change. After 6 weeks he stopped having mucosy stool and stomach swelling was gone 1 week after gluten removal. 

 

His skin continued to be a huge problem and almost all of his upper body was covered in large boil like itchy lesions. He would get them on his neck, arms, genetails, face, arm joints, leg joints and buttocks. At this point we saw a Dermatologist who diagnosed him with DH. She was certain that was the problem. (As we had suspected). Since we had been gluten free, she suggested we go Corn free. That made a HUGE difference. Even the small amount of corn in mustard would make him sick. After that we still had some outbreaks but found some people on this site removing iodized salt to stop DH. We tried that and within 48 hours his skin was almost completely clear. 

 

So after this long introduction, the question is what steps to do to be officially diagnosed with Celiac? Our regular doc can't do it because we removed gluten before the blood test so he needs a positive test to Dx. We were sent to UNC's Children's Hospital and the head of PedsGI said that "babies can't get Celiac because there is no way to have gluten in breastmilk". He also refuses to accept an infant with DH even though we have 2 other derms confirming it and a positive biopsy. We have been sent to 5 allergists to look for "allergies". Each doc there says it is Celiac and sends us back. How do I get this officially diagnosed and what kind of follow up care should I be asking for?

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My understanding is that a diagnosis of DH is also a diagnosis of celiac. The dermatologist should be able to provide an official diagnosis. Or your son's ped. DH is the skin manifestation of celiac.

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I'm so sorry you've had to go through this, and I feel for the little guy! Unfortunately I don't have any ideas for the diagnosis piece, but for what it's worth I'm totally convinced that it is possible for a baby to be exposed to gluten through breastmilk alone. I'm 37 years old and am currently in the process of getting tested for celiac, at long last. Among many other related problems for my whole life, I went through three years of fertility treatments in my early 30's and was finally able to conceive through repeated IVF. My daughter was born just over four weeks early and almost died at birth. She was resuscitated after 15 minutes without breathing on her own and had Apgars of 2 and 1. I am thankful every single second that she pulled through and is my wonderful little snuggle-bug.

 

However, she's had digestive problems from the time she was two days old, when my breastmilk came in. She screamed for hours on end, and a roomful of nurses and doctors could not calm her down or figure out what was wrong. They concluded that it was just tummy upset from an immature digestive system (which seemed plausible) and assured us that she'd grow out of it soon. But she didn't - she kept getting fussier and fussier. Anyway, to make a very long story short, our doctors repeatedly dismissed our concerns until it got so bad that by the time she was five months old she never, EVER slept for more than 45 minutes without waking up screaming. When she did sleep, she constantly twitched and thrashed around like she was in pain. She had projectile vomiting many times per day, though she was gaining weight okay because she nursed voraciously. She tested negative for pyloric stenosis, and seizures were ruled out. A neurologist said she had early signs of CP. It was clearly food-related, but every doctor we saw insisted that it wasn't possible for her to be sensitized to any foods through breastmilk. After a few months with no  support from the doctor, I sytematically eliminated one after another of the top 8 allergens from my diet she improved somewhat, but I started feeling so sick that I could not keep it up. Anyway, we eventually ended up seeing an allergist who immediately put her on Neocate, a super-hypo-allergenic elemental formula made from corn syrup solids. I was horrified at the thought of feeding my baby that instead of breastmilk, but we were so desperate that we tried it. Within 24 hours, she was smiling and contented for the first time in her life. On the second day, she slept five hours straight. Everyone was absolutely amazed. Her neurological problems were almost gone a few months later, and the neurologist said she didn't have CP and discharged her. Her food allergy tests were all negative, both then and a year later. Things started downhill again when we introduced solids at 7 months, then again when our insurance stopped covering Neocate when she turned 1...but that's another story. She clearly reacts strongly to wheat, but I haven't tried a fully gluten-free diet yet because I want her tested first. We just switched doctors and I think we may have finally found one who will test her; we'll see at our appointment in a few weeks.

 

From what I've read, it sounds like the DH should be sufficient for a diagnosis of celiac. I've heard mixed opinions about the importance of an official diagnosis, but as the parent of a preschooler with still-undiagnosed food issues, I feel very strongly that an official diagnosis is important. You need to word "celiac" written in his health records so that schools and others will take it seriously later. Maybe you could print out the factsheet below and bring it to your doctor?

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets5_Diagnosis.pdf

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What you said is our understanding as well. The military TriCare system will not accept the diagnosis of Celiac via DH. They also will not schedule for a gut biopsy without a positive blood test. Unless we have a outside doctor list him as having Celiac, the DH diagnosis gets us nowhere. It is absurd. Our dermatologist put DH on his file and wrote on her notes that Celiac would be the source but that isn't enough for our medical system to officially diagnos him. 

My understanding is that a diagnosis of DH is also a diagnosis of celiac. The dermatologist should be able to provide an official diagnosis. Or your son's ped. DH is the skin manifestation of celiac.

 

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I'm so sorry you've had to go through this, and I feel for the little guy! Unfortunately I don't have any ideas for the diagnosis piece, but for what it's worth I'm totally convinced that it is possible for a baby to be exposed to gluten through breastmilk alone. I'm 37 years old and am currently in the process of getting tested for celiac, at long last. Among many other related problems for my whole life, I went through three years of fertility treatments in my early 30's and was finally able to conceive through repeated IVF. My daughter was born just over four weeks early and almost died at birth. She was resuscitated after 15 minutes without breathing on her own and had Apgars of 2 and 1. I am thankful every single second that she pulled through and is my wonderful little snuggle-bug.

 

However, she's had digestive problems from the time she was two days old, when my breastmilk came in. She screamed for hours on end, and a roomful of nurses and doctors could not calm her down or figure out what was wrong. They concluded that it was just tummy upset from an immature digestive system (which seemed plausible) and assured us that she'd grow out of it soon. But she didn't - she kept getting fussier and fussier. Anyway, to make a very long story short, our doctors repeatedly dismissed our concerns until it got so bad that by the time she was five months old she never, EVER slept for more than 45 minutes without waking up screaming. When she did sleep, she constantly twitched and thrashed around like she was in pain. She had projectile vomiting many times per day, though she was gaining weight okay because she nursed voraciously. She tested negative for pyloric stenosis, and seizures were ruled out. A neurologist said she had early signs of CP. It was clearly food-related, but every doctor we saw insisted that it wasn't possible for her to be sensitized to any foods through breastmilk. After a few months with no  support from the doctor, I sytematically eliminated one after another of the top 8 allergens from my diet she improved somewhat, but I started feeling so sick that I could not keep it up. Anyway, we eventually ended up seeing an allergist who immediately put her on Neocate, a super-hypo-allergenic elemental formula made from corn syrup solids. I was horrified at the thought of feeding my baby that instead of breastmilk, but we were so desperate that we tried it. Within 24 hours, she was smiling and contented for the first time in her life. On the second day, she slept five hours straight. Everyone was absolutely amazed. Her neurological problems were almost gone a few months later, and the neurologist said she didn't have CP and discharged her. Her food allergy tests were all negative, both then and a year later. Things started downhill again when we introduced solids at 7 months, then again when our insurance stopped covering Neocate when she turned 1...but that's another story. She clearly reacts strongly to wheat, but I haven't tried a fully gluten-free diet yet because I want her tested first. We just switched doctors and I think we may have finally found one who will test her; we'll see at our appointment in a few weeks.

 

From what I've read, it sounds like the DH should be sufficient for a diagnosis of celiac. I've heard mixed opinions about the importance of an official diagnosis, but as the parent of a preschooler with still-undiagnosed food issues, I feel very strongly that an official diagnosis is important. You need to word "celiac" written in his health records so that schools and others will take it seriously later. Maybe you could print out the factsheet below and bring it to your doctor?

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets5_Diagnosis.pdf

I am so sorry that you have been going through all of that. I completely understand. Have you looked into the GAPS or Paleo/Primal diets? We changed our life thanks to our son and found huge relief with the Paleo diet. The hydrolized formulas all contain corn which even though it has no corn or soy "proteins" it still is problematic for our son. He has "leaky gut" from all the intestinal trauma. Our main doc said if we hadn't fixed his diet so early he might have progressed into an Autism diagnosis because the grains, soy and dairy make him have neropath issues and distance himself. I would suggest looking into what snacks and treats you give your little one. The diet change was hard the first month but it has been amazing in so many ways. When our son gets ahold of things that are not great for him, he does more than have a Celiac reaction, he has a full body and mind melt down. 

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For what purpose is the Celiac dx? School? Get your dermatologist to write a letter saying your child has celiac/dh and must avoid gluten. Add anything else pertinent. Hold on to the letter like gold.

Find any doc as a pcp who will accept the dx. You're just going to have to draw the line and have some docs for some things, some for others. You may end up at an ND family practice for well check ups.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
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