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Babies With Celiac Disease

Sciandra

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Sciandra Newbie
Sciandra
Posted

My daughter is 6 months old. She has had issues since birth with her poop. She is exclusively breastfed. Everytime I eat anything high in gluten like pancakes, her poop is nothing but mucous. A few weeks ago I gave her some Gerber puffs, and she had mucousy poop again. I stopped giving them to her. A couple days ago, I gave her some again and the same thing happened. She had her 6 month check up today and instead of gaining her usual pound a month, only gained 7 oz. She is still on her curve but still.

 

They did a tTGA and an EMA today and I should have the results next week. I am 100% positive my mom has Celiac Disease. She is calling for the test next week. If my daughter is positive, I will also be getting my son and myself tested. I don't have any symptoms but my 4 year old does[behavior and not gaining weight]

 

Have any of your babies been diagnosed so young?

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kareng Grand Master
kareng
Posted

Please read this.

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Sciandra Newbie
Sciandra
Posted
  • Author

I guess I should have added that if the tests are negative, she will be referred to a pediatric GI and Geneticist since her dr said they can do another test to see if she has a certain gene for it.

kareng Grand Master
kareng
Posted

About 30% of the US population has the gene. Just having the gene doesn't mean you have Celiac. I'm not trying to discourage you. I just want you to know the facts.

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Sciandra Newbie
Sciandra
Posted
  • Author

Its okay! Her dr was completely new to this and was looking it up on his phone right in front of me and mentioned the genetic testing. I don't think he had ever dealt with anyone having a gluten intolerence.

kareng Grand Master
kareng
Posted

Its okay! Her dr was completely new to this and was looking it up on his phone right in front of me and mentioned the genetic testing. I don't think he had ever dealt with anyone having a gluten intolerence.

The University of Chicago Celiac center is an easy to read site. The doc in charge is a ped GI. There is an email contact address on the site. If your doc has questions, I think Dr. G would like to help. They want to educate doctors.

Mdhriggin Newbie
Mdhriggin
Posted

My daughter was diagnosed at 21 months, and so we kept my son gluten free until he was 12 months. We started him on gluten and within two months he was showing celiac signs, so he was diagnosed then. It is definitely possible especially with the family history and those symptoms

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MommaBecker Newbie
MommaBecker
Posted

My daughter is 6 months old. She has had issues since birth with her poop. She is exclusively breastfed. Everytime I eat anything high in gluten like pancakes, her poop is nothing but mucous. A few weeks ago I gave her some Gerber puffs, and she had mucousy poop again. I stopped giving them to her. A couple days ago, I gave her some again and the same thing happened. She had her 6 month check up today and instead of gaining her usual pound a month, only gained 7 oz. She is still on her curve but still.

 

They did a tTGA and an EMA today and I should have the results next week. I am 100% positive my mom has Celiac Disease. She is calling for the test next week. If my daughter is positive, I will also be getting my son and myself tested. I don't have any symptoms but my 4 year old does[behavior and not gaining weight]

 

Have any of your babies been diagnosed so young?

My son had his genes activated at 2 month old after problems with Thrush were treated with antibiotics and antifungals. We had a really hard time convincing doctors what was happening. If you can get a positive blood test that will help. Our son was so sick that we didn't wait to do the test and went gluten free immediately. He also has Dermatitis Herpetiformis which may look like eczema to most doctors. I would recommend you get the test, keep a food journal and request a pediatric gi. The wait for them can be months so you will have plenty of time to do lots of trial and error! Good luck. 

Morgans Mommy Newbie
Morgans Mommy
Posted

Im pretty sure my daughter has Celiac desease or some kind of Gluten intolerance.  She is only 15mos. but was doubleling over in pain with attacks that would last for 2 hours or longer.  Her condition just recently started at the end of March, and she has not been the same since.  I have removed Gluten from her diet as well as mine and removed Gluten all together out of the home.  She had another attack last Saturday, when she was visiting with a grandparent.  Im not sure what she ate, but pretty sure she was probably Glutened.  She does not ever throw up but she gets very bad stomach pain and doubles over screaming for hours.  Her overall wellbeing has made major improvements since Gluten was removed about a month ago.  She has got a lot more energy and is back to her peppy self.  Also, her growth has leveled off and she is not following her growth curve.  At 15mos, she is only 17.5 lbs and is the size of a 9mos old.  She is constipated most of the time and occaisionaly has diarreah.  She has not had any official testing done yet for Celiac because she is already traumatized from Dr. visits and ER visits, and I understand that this condition is hard to diagnose.  She has had x rays and ultrasound which came back normal.  None of the doctors have even mentioned Celiac desease to me, but I have been researching a lot on the internet.  She also breaks out in hives and has ezema.  I have not been able to confirm exactly was gives her hives but it looks like eggs which have also been removed from her diet.  Does this sound like Celiac Desease?   I feel so helpless when she has an attack and it is horrifying because I can tell she is in extreme pain.  I massage her stomach and her back when she gets one, and Im trying to make sure she does not get glutened.  Is it possible for a baby to develope Celiac at 14 mos?  It appears that this all started after taking her to the ER for a UTI which was pretty traumatic for her.  Im wondering if this traumatic event triggered it.  Any answers or advice I can get would be much appreciated.

momma bee Rookie
momma bee
Posted

Hi Morgans Mom... Sounds a lot like my daughter who was diagnosed at 17 months. Her blood work was negative but she was having surgery for her adenoids and I had a goods ENT surgeon who was suspicious of either esophageal eosinophilia or celiac and got a GI surgeon to do a scope. Had we not had that we would not have known. I hadn't gone gluten free at all before but the issues with weight and the doubling over in pain for sure which i really could not phathom at that age :( my daughter had also virtually stopped growing at 9 months... Similar weights and everything!

Feel fortunate myself we had that Dr who got it investigated! Might have gone through years never even suspecting! Hope you have success with getting her tested! And fingers crossed it is an easy diagnosis and not these complicated some positive sine negative some unclear! At their age the blood tests are unreliable...

The other thing is that she needs to be injesting gluten for the testing to be done.. So the sooner the better before she is off it long?

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    • Wends
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      By Wends · Posted

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But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. 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White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. 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    • KimMS
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      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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