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Kimmik95

How Young Was Your Child Diagnosed?

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My 7 year old son has Celiac Disease and was diagnosed 11/2010.

I just recently had a baby with Down Syndrome, so we are pretty much expecting her to have a diagnosis at some point, therefore, I was just going to keep her gluten free at least until she was old enough to communicate problems so if/when the disease develops, we can figure it out quickly without much suffering on her end. However, I don't want to just perminently keep her gluten-free without a diagnosis or symptoms.

Anyway, she's only a month old at this point and has been having some issues with a very large stomach. The doctors have some theories of diseases, but the celiac disease just is sticking in the back of my head. Her pediatrician is going to talk to the pediatric GI doctor about the possibility. From what I've been told and can find up to this point, consumption of the full gluten protein, which is needed as 1 of the 3 things to have Celiac disease is not possible through breast milk.

I posted here several months ago and had several people reply that their children had issues with breastfeeding, but I didn't ask about the celiac disease diagnosis and was curious if those were gluten sensitivities or allergies vs. Celiac Disease.

So, my question is - how young was your young child diagnosed and what were the symptoms. The youngest I can think of that I know is about 17 months.

Thanks.

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My child started to get sick about a 3 months b4 she turned 2. It was diarrhea, horrible bouts, got so bad some were pure liqued. It started mildly but went to 12 times or more a day. She did vomit a little but not like the diaper stuff. She also went from 98% in weight to 4.8% from Sept to Dec, when we finally got her diagnosed.

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My daughter was diagnosed at about 17 months old. She was breastfed and there were problems from the start. Her BM's fit the description of "over milk production" but they were totally gross. (TMI alert * green with fat moucus)

She was hospitalized with dehydration and many UTI infections before being diagnosed because of the "D" and vommiting.

She was later diagnosed with Eosinophilic Esophagitus when she was 6.

From everything we have learned here... there is gluten in breastmilk and therefore as soon as the infant's immune system starts working on it's own, Celiac Disease is a possiblity.

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My daughter was diagnosed at about 17 months old. She was breastfed and there were problems from the start. Her BM's fit the description of "over milk production" but they were totally gross. (TMI alert * green with fat moucus)

She was hospitalized with dehydration and many UTI infections before being diagnosed because of the "D" and vommiting.

She was later diagnosed with Eosinophilic Esophagitus when she was 6.

From everything we have learned here... there is gluten in breastmilk and therefore as soon as the infant's immune system starts working on it's own, Celiac Disease is a possiblity.

How long did it take for you daughter to heal? We suspect my 12 month old may have celiac or gluten sensitivity. He vomits (sometimes severely) after eating wheat/gluten. He also has a big belly. I know babies have bellies but even his daycare caretakers comment on how they love his belly. He was breastfed until about 10-11 months old. I kept getting conflicting info about gluten in breastmilk so we didn't know if we should take him off breastmilk or not. So we decided to just go against the advice of some doctors and lactation consultants and put him on formula because my gut feeling was that is what we needed to do. He still has that belly and he is so tiny for his age. He's almost 13 months old and still fits in some 9 month clothes. He was has gone from the 75th-90th percentiles in height and weight to the 5th percentile for height and 25th for weight. Now his dad and I are both really small in height and weight so maybe that's it, but I just wonder. He never had vomitting issues with breastmilk but I wonder if he does have celiac how long it would take his body to heal and if he will have that belly forever or what.

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My son wasn't diagnosed until he turned 10. However I thought I'd share that while he was exclusively breastfed, he always had unidentified problems as a baby. He would scream and cry every evening for HOURS. He was a normally happy baby (could be put down and smile and look around), but he was definitely in pain toward the end of the day. He also had eczema as a baby, and asthma until he was about 4 years old. I tried cutting out brassicas, alliums, dairy, soy, etc when he was nursing but never found out what the problem was. I would give him weak tea from dill, mint, or fennel to help with his gas.

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Thanks for the info.

My child started to get sick about a 3 months b4 she turned 2. It was diarrhea, horrible bouts, got so bad some were pure liqued. It started mildly but went to 12 times or more a day. She did vomit a little but not like the diaper stuff. She also went from 98% in weight to 4.8% from Sept to Dec, when we finally got her diagnosed.

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Thanks for the post.

Everything I've researched and have discussed with doctors has indicated that the full gulten protein does not pass through breastmilk and therefore a child cannot develop celiac disease until they are on solids with gluten. The article below is the best one I've seen for explaining why:

http://www.celiac.com/articles/297/1/Breast-Feeding-and-Celiac-Disease/Page1.html

I know several people have posted before that their infants have had issues with gluten in breastmilk, which is why I was curious as to find anyone who has had an actual diagnosis of celiac disease in an infant that was exclusively breastfed before the infant was put on solids.

My daughter was diagnosed at about 17 months old. She was breastfed and there were problems from the start. Her BM's fit the description of "over milk production" but they were totally gross. (TMI alert * green with fat moucus)

She was hospitalized with dehydration and many UTI infections before being diagnosed because of the "D" and vommiting.

She was later diagnosed with Eosinophilic Esophagitus when she was 6.

From everything we have learned here... there is gluten in breastmilk and therefore as soon as the infant's immune system starts working on it's own, Celiac Disease is a possiblity.

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That's interesting you say that because my son had horrible issues with gas pains as an infant. He was fed EBM for about 3 months and then switched to formula, but eventually needed to have lactose free to ease the gas pains. Once I discovered those gas drops for him, he was much better, so we never looked into it more than that.

My son wasn't diagnosed until he turned 10. However I thought I'd share that while he was exclusively breastfed, he always had unidentified problems as a baby. He would scream and cry every evening for HOURS. He was a normally happy baby (could be put down and smile and look around), but he was definitely in pain toward the end of the day. He also had eczema as a baby, and asthma until he was about 4 years old. I tried cutting out brassicas, alliums, dairy, soy, etc when he was nursing but never found out what the problem was. I would give him weak tea from dill, mint, or fennel to help with his gas.

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My daughter was diagnosed at 10, 6/09. She didn't seem to have any problems until in January she got the flu and just didn't get entirely better. She started losing weight and was weak and tired. If you look at her growth chart it's completely smooth - she is in the same percentile every year (100% height, 50% weight) except for a big dip that year. Looking back she had tiredness, irritability and some issues at school - which seemed to have resolved, but I can't tell if it's because she is now at a school that's a much better fit or because she's feeling better. It's probably a bit of both.

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She had problems right from the start of adding rice cereal. She was severely constipated and her belly seemed to bloat right up. The doctor said to move on to barley cereal and the problems just continued and progressed to vomitting and "D".

It was also possible that she was getting my Celiac antibodies through the breastmilk, because I was not diagnosed at that time.

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Thanks for the post.

Everything I've researched and have discussed with doctors has indicated that the full gulten protein does not pass through breastmilk and therefore a child cannot develop celiac disease until they are on solids with gluten. The article below is the best one I've seen for explaining why:

http://www.celiac.com/articles/297/1/Breast-Feeding-and-Celiac-Disease/Page1.html

I know several people have posted before that their infants have had issues with gluten in breastmilk, which is why I was curious as to find anyone who has had an actual diagnosis of celiac disease in an infant that was exclusively breastfed before the infant was put on solids.

We were unable to get a "diagnosis" of celiac disease when my DD went gluten free, as she was NEVER able to tolerate any amount of gluten - she refused to eat it in infancy. A handful of tentative trials from months 8-11 made it obvious that we could not proceed with feeding her gluten - EVER. She is positive for celiac genetics - both DQ2 and DQ8, as am I (I was "asymptomatic", undiagnosed and on a gluten free diet for 2 1/2 years before it ever occured to me that gluten was *MY* problem too - I went gluten free to help my nursing DD). Our doctors involved in our care did not understand the severity of our issues when she was younger, nor did I.

Most telling was the extensive staining and damage that occured to her baby teeth. The obvious staining on her teeth stopped as soon as I went gluten free. Our pediatric dentist that saw her before I went gluten free was clueless as to the cause of her extensive staining (even though we had told him that gluten introduction had failed miserably), and he admonished us extensively for our lack of care and brushing of her teeth (NOT TRUE, yet I believed him because I had no other explanations at the time). I am uncertain if the extensive damage to her teeth was a function of gluten passed through my breastmilk (seems it must be related as the staining STOPPED, producing a distinct line, when I eliminated gluten from my diet), a function of my own antibodies being transmitted through my breastmilk (and was I making them of my own accord, or was she giving my body information to produce antibodies for her), a result of the handful of attempted gluten trials, or what. The celiac researchers that I have contacted in our quest for information have indicated that they simply don't know and that they were unaware of research into such things.

Our DD was exclusively breastfed before being put on solids, but was unable to "achieve" a classic "celiac" diagnosis because of her inability to consume gluten.

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My daughter was diagnosed through one or two things positive on the blood test, genetic testing positive for DQ2 and DQ8, and improvement on the gluten free diet. She was too ill to have the endoscopy done at the time. Hospitalized for dehydration trying to do the gluten challenge for the blood test.

My daughter is 8. from what I can remember the baby cereal introduction is one teaspooon of the cereal to 5 teaspoons breast milk. There should not have been cross contamination in rice cereal.

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We were unable to get a "diagnosis" of celiac disease when my DD went gluten free, as she was NEVER able to tolerate any amount of gluten - she refused to eat it in infancy. A handful of tentative trials from months 8-11 made it obvious that we could not proceed with feeding her gluten - EVER. She is positive for celiac genetics - both DQ2 and DQ8, as am I (I was "asymptomatic", undiagnosed and on a gluten free diet for 2 1/2 years before it ever occured to me that gluten was *MY* problem too - I went gluten free to help my nursing DD). Our doctors involved in our care did not understand the severity of our issues when she was younger, nor did I.

Most telling was the extensive staining and damage that occured to her baby teeth. The obvious staining on her teeth stopped as soon as I went gluten free. Our pediatric dentist that saw her before I went gluten free was clueless as to the cause of her extensive staining (even though we had told him that gluten introduction had failed miserably), and he admonished us extensively for our lack of care and brushing of her teeth (NOT TRUE, yet I believed him because I had no other explanations at the time). I am uncertain if the extensive damage to her teeth was a function of gluten passed through my breastmilk (seems it must be related as the staining STOPPED, producing a distinct line, when I eliminated gluten from my diet), a function of my own antibodies being transmitted through my breastmilk (and was I making them of my own accord, or was she giving my body information to produce antibodies for her), a result of the handful of attempted gluten trials, or what. The celiac researchers that I have contacted in our quest for information have indicated that they simply don't know and that they were unaware of research into such things.

Our DD was exclusively breastfed before being put on solids, but was unable to "achieve" a classic "celiac" diagnosis because of her inability to consume gluten.

So interesting about the teeth. My daughter (who turns 8 in 3 days) has many cavities and stained teeth. Plus some enamel on her molars never formed so she's had to have teeth capped. Very interesting. Any personally I went my whole adult life without any cavities, and since I was pregnant with my daughter (8 years ago obviously) I've had 10 cavities. I thought it was because I threw up everyday of my pregnancy, but now I think my gluten intolerance was set off with my pregnancy based on timing of symptoms.

My daughter was diagnosed gluten sensitive (I prefer "intolerance" because I think "sensitive" is too soft a word) last October based on dietary response. Her blood tests were normal. I wasn't even close to willing to put her back on gluten to do a endoscopy. Not after many sleepless nights worried that she had cancer. She was very sick.

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My 2 yr old daughter was diagnosed at 19 months finally after every GI dr told me she was negative. She had issues from the time she was 3 months old. She was EBF and I was told some gluten can make it through your breast milk. We switched her to Similac Alimentum at 5 months old and that help until we introduced solids. She was always so sick and they even ran test for Cystic Fibrosis bc of her URI's she kept getting... Finally we say a GI they ran for celiac, it was negative I was told she had Toddler Diarrhea at 13 months old and to lay off the juice... She only drank soy milk and water (soy bc she has an allergy to casein.) I took her back to her pedi and they ran more tests to find an allergy to wheat. After that test result I discovered another genetic disorder in my family. Immuglobulin A deficiency. IgA is one of the immunoglublins that are tested for Celiac.... We requested her results again and they explained to me that her Negative result was bc her IgA was at a "normal" level for someone with a normal immune system but was HIGH for her therefor giving a false-neg result!!!

she was finally given a diagnosis of celiac disease at 19 months old. Her pedi and GI opted out of endoscope bc of her age and we switched right away to gluten-free diet. Now my 2 month old is having the same issues when I consume gluten. I eat gluten-free now and she is 100times better!

Just thought I would let you know my story and what we went through. My 2 month has an appt with GI in less than a month.

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My daughter was diagnosed through one or two things positive on the blood test, genetic testing positive for DQ2 and DQ8, and improvement on the gluten free diet. She was too ill to have the endoscopy done at the time. Hospitalized for dehydration trying to do the gluten challenge for the blood test.

My daughter is 8. from what I can remember the baby cereal introduction is one teaspooon of the cereal to 5 teaspoons breast milk. There should not have been cross contamination in rice cereal.

My 13 month old may have celiac. He actually has reacted to Gerber rice cereal. I contacted the company and they can't guarantee it's gluten-free but said there shouldn't be any in there. But my son had the same reaction to the rice cereal as he did to oatmeal and other foods containing wheat. He's not diagnosed with anything yet, but since he did react to it I've suspected it's possible the cereal was contaminated.

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I just know that rice cereal did not go well. It seemed to me that she already had damage and adding cereal made it more evident. Which was still ignored by doctors until she started to fall into FTT.

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My son was diagnosed at age one. He had digestive problems since birth. Gas, cramping, constipation, spitting up. We went through formulas up through Neocate, reflux medicines. By one year old he was eating rice cereal and baby food pears and losing weight. He was diagnosed by positive gene test, and an endoscopy that showed slight changes in the lining. I figure he had an immature digestive system and the failure to heal or mature triggered celiac to develop. So it may be impossible for an infant to be diagnosed, but my son certainly had digestive problems his whole first year. He is now seven and healthy, though small, following his gluten free diet. :rolleyes:

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My daughter was diagnosed 2 1/2 months ago at the age of 4. She had GI symptoms all her life...reflux (on PPI until 4 years of age), cramping, gas, severe "seasonal allergy" type symptoms. Finally, this spring, we saw an allergist because the nasal congestion, and worsening asthma symptoms had been going on continuously for almost a year with no improvement on a list of meds as long as Brenna. He decided at the last minute to add a celiac panel to the other blood work he ordered, and voila!, a diagnosis. Since becoming gluten-free, the "allergy" symptoms and asthma have gone completely away. Her only meds now are vitamins and probiotics. She has more energy, more stamina, and best of all, no more tummy aches. She has also gained 3.5 pounds since becoming gluten-free.

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
    • Congratulations!!🎆🎇🎊🥂  
    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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