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Celiac Mom With Baby - When To Introduce Gluten

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Hello -

I have celiac disease and am the mom of a 6 month old little girl. Up until this point she has been exclusively breast fed. I am thinking of starting her on rice cereal in the next few weeks but am unsure as to when, if ever, to introduce gluten. I read so much conflicting information.

Any advice or resources?

Thanks!!

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There has been research that shows introducing wheat *before* three months or *after* seven months, increases the chance of a child with celiac family history also becoming celiac. Between four and six months appears to be the best time for them. (Though really, four months? What with all the "wait until six months to start adding solids"? This sort of advice confuses me as a mom-to-be.)

I have no idea what I'll do with our little one. Honestly, our house is going to be mostly gluten free anyway, and I'm not going to want evil-crumb filled toddler hands all over the house. So, my husband and I are thinking that most likely, we'll keep the little one gluten free, but if he wants to introduce some gluten around six months, outside of the house, we might consider it. Like any new parents, however, we're totally guessing our way through this one. :D

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The AAP finally is in line with the WHO about waiting to introduce ANY solids until 6 months of age. I really don't think they have any idea about gluten at present because the thought I keep reading is the 4-7 month window (which is now being questioned). But I have two boys (4 and 2), both with celiac and both introduced to gluten 6-7 months.

With our current almost 6 month old, we're doing something different. Originally we were going to keep her gluten-free until she was older - less messy, could tell us if anything hurt her, etc. But after looking up something my husband came across a research study on introducing gluten to babies predisposed to getting celiac disease. After much talk we decided to do it. Of course she has to have the genes to be a part of the study. For us, the study is a way to see if she has the genes, control gluten in her diet, keep track of her levels, etc. If anyone's interested I'll share the info but I didn't want to post here.

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My mom's a neonatologist and a certified pediatrician, and her advice is to introduce it at about six months, but definitely not before 4 months. Introducing it at just the right moment isn't going to keep the kids from getting celiac, as we know, but that seems to be the consensus advice. To all who have posted, though, your kids are lucky that you know all about this disease and can be there to help them if they do develop it!

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I wouldn"t give the baby gluten until she can say "Owch" or "I have to barf/go to the bathroom" :)

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Frankly, no idea! I don't think anyone does.

Ollie is 4 months and doing really well. Mom who is not celiac has been gluten-free through breast feeding and we have yet to get his genes tested.

He was originally going to be born in St. Thomas' hospital in London (possibly the foremost paediatric unit in the UK) but after we moved house this was impractical. While he was at St. Thomas' we had a scan and they were doing a study on diet and introduction of gluten. It seemed quite good, we would have got free genetic screening etc. but the study was aiming to introduce gluten at 3 months.

When I tried to find out more I was completely blocked, they refused to tell me WHO was financing the study. I rather suspect this is one of the baby food manufacturers, the same kind that make formula from bits of fish and other allergens like soya.(Not to mention transfats etc.)

http://www.dailyrecord.co.uk/2009/05/04/re...86908-21330827/

... anyway .. who to trust? I really don't think the research has been done nor can be done in less than 30 years.

If they started now then the study would need to retest in 30 years time and see what the incidence rate of celiac disease was then.

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Dr. Fasano at the U of Marlyand is doing a clinical trial on this very subject, and their preliminary results show that delaying the introdution of gluten until the child is at least 1 yr old can delay the onset of celiac. (He presented these results at a talk I went to last summer).

Here's a link to his research. He's still trying to get subjects for the research experiment.

http://www.celiaccenter.org/research.asp

However, it's a personal decision, but I wanted to chip in this recent research.

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Dr. Fasano at the U of Marlyand is doing a clinical trial on this very subject, and their preliminary results show that delaying the introdution of gluten until the child is at least 1 yr old can delay the onset of celiac. (He presented these results at a talk I went to last summer).

Here's a link to his research. He's still trying to get subjects for the research experiment.

http://www.celiaccenter.org/research.asp

However, it's a personal decision, but I wanted to chip in this recent research.

Yes, this is the one we enrolled our daughter in (still waiting on genectic test results). I would have said previously but wasn't sure it was appropriate.

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I do agree with the pp who said it is a personal decison and I am not pushing my view onto anyone but the thing I keep coming back to is the thought: is avoiding gluten really going to do any harm? I haven't seen any research saying that a gluten free diet has ever harmed anyone. Just my two cents.

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I do agree with the pp who said it is a personal decison and I am not pushing my view onto anyone but the thing I keep coming back to is the thought: is avoiding gluten really going to do any harm? I haven't seen any research saying that a gluten free diet has ever harmed anyone. Just my two cents.

I think that sums it up for me.

I really just don't understand why anyone would introduce it deliberately if they knew the baby will sooner or later develop celiac disease. It's not like baby can't see or hear, it's just avoiding a type of food that many cultures managed without.

On the other hand I guess there is also a case for developing some sort of immunity? I really don't know ...

As I said above, unless we test babies and then retest them every 5 years how can anyone say if it will cause an auto-immune reaction in 25 or 30 years?

I'm interested to see the research from Fasano but he has been rather slow releasing research in the past. Not a personal criticism of him, more I guess he is going to be criticized widely from the food industry who will pull out all the stops to try and discredit the research.

Several other factor's should IMHO be considered.

Development of the child including non-reversible problems such as under developed spleen.

Neurological problems, specifically neuro-developmental disorders such as Autism spectrum.

A question which will not be answered for a long time is if transglutamise gluten reaction actually causes autism spectrum 'disorders'. Many parents of autistic children report good response to a gluten-free/CF diet and autism is a neuro developmental disorder. Many of us with autism spectrum tendencies (I really don't like using the word disorder) find we become far 'worse' (another bad word) when glutened.

This is really just a start? What else might be caused or triggered?

We just need to look through the posts here: Does joint pain go away after being gluten-free? What about the nebulous brain fog etc.

The question I am asking is what if we never had to have these problems that often do not go away once developed?

What if the development phase of a babies brain can be adversely affected, what if he never develops a normal spleen but could have done ...

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The question I am asking is what if we never had to have these problems that often do not go away once developed?

What if the development phase of a babies brain can be adversely affected, what if he never develops a normal spleen but could have done ...

EXACTLY! There are lists and lists of possible problems that gluten can cause. It seems everyone reacts to it differently. They are not always sudden, noticable, or even obvious abdominal problems. Babies cannot tell us what they feel, we can't look inside their little brains to see if it's developing properly and/or if gluten is somehow affecting development........I just feel that when it's in the family and there is any remote possibility that the baby could be affected, better safe than sorry. Keep them gluten free to the best of your ability.

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EXACTLY! There are lists and lists of possible problems that gluten can cause. It seems everyone reacts to it differently. They are not always sudden, noticable, or even obvious abdominal problems. Babies cannot tell us what they feel, we can't look inside their little brains to see if it's developing properly and/or if gluten is somehow affecting development........I just feel that when it's in the family and there is any remote possibility that the baby could be affected, better safe than sorry. Keep them gluten free to the best of your ability.

What I don't understand is why introducing gluten seems to be looked at in the same way as "your baby might one day be able to see" or "one day he might be able to be exposed to direct sunlight".

It is like there is some huge reward to be gained from baby being able to eat gluten, something worth taking a risk.

If baby was blind and they wanted to do a risky operation that would enable him to see then this is a difficult question. He might be left paralyzed but if the operation is a success he will be able to see and play with the other kids. Thank goodness I don't have to make that decision.

However: If you introduce gluten, baby can eat commercial foods and eat with the other kids but may develop some irreversible problems? Where is the risk/reward? It is almost like we are being told to introduce gluten to conform?

As you say many of our own problems have developed over years... nothing you could monitor and say "Oh if I had stopped eating gluten then".

I am probably a little literal at the moment: (As a result of accidental glutening by CODEX products) Perhaps I am missing something 'emotional' about this? I just don't see ANY reason why anyone would do this to a child with the genes?

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EXACTLY! There are lists and lists of possible problems that gluten can cause. It seems everyone reacts to it differently. They are not always sudden, noticable, or even obvious abdominal problems. Babies cannot tell us what they feel, we can't look inside their little brains to see if it's developing properly and/or if gluten is somehow affecting development........I just feel that when it's in the family and there is any remote possibility that the baby could be affected, better safe than sorry. Keep them gluten free to the best of your ability.

What I don't understand is why introducing gluten seems to be looked at in the same way as "your baby might one day be able to see" or "one day he might be able to be exposed to direct sunlight".

It is like there is some huge reward to be gained from baby being able to eat gluten, something worth taking a risk.

If baby was blind and they wanted to do a risky operation that would enable him to see then this is a difficult question. He might be left paralyzed but if the operation is a success he will be able to see and play with the other kids. Thank goodness I don't have to make that decision.

However: If you introduce gluten, baby can eat commercial foods and eat with the other kids but may develop some irreversible problems? Where is the risk/reward? It is almost like we are being told to introduce gluten to conform?

As you say many of our own problems have developed over years... nothing you could monitor and say "Oh if I had stopped eating gluten then".

I am probably a little literal at the moment: (As a result of accidental glutening by CODEX products) Perhaps I am missing something 'emotional' about this? I just don't see ANY reason why anyone would do this to a child with the genes?

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I hesitated responding to this but wanted to say why we decided to enroll our daughter in the study. For one, she will be genetically tested so we'll know if we ever have to worry about celiac disease developing. Two, regardless of her genes, she will be raised in a mostly gluten-free household. Both her older brothers are diagnosed (4 and 2 years old, both had strong blood results, one had positive biopsy, other we didn't do a biopsy). Because of them, all meals, snacks, baked goods, etc. are gluten-free. The exceptions are foods my husband or I bring in to eat (me occasionally, him daily). Finally, because of how difficult maintaining a strict gluten-free diet is, why should she have to if she doesn't have to? Talking about as she gets older and of course as a woman. If she's negative for the genes, we won't have to worry about every little thing that she eats.

And with the study, she may or may not be exposed to gluten somewhere between 6-12 months and after 12 months she'll eat what the house eats (gluten-free). Meanwhile she'll be monitored. Plus, now I know what celiac disease is and can watch for signs. If I let myself, I could beat myself up for not seeing something going on with my boys and keep wondering how much damage was done (if any). But I try to not look back and just look ahead. This study was the best way for us to help contribute to help future children but also for us to monitor her reaction to gluten in a controlled way. But without the study, we would have kept her gluten-free until she was older. And as I said, she'll be gluten-free come 12 months.

I can totally understand about what if I could have prevented this or what not. Like I said, I get that with my boys. But now I feel informed and comfortable with doing the study. If at any time I did not, we would simply pull her out. Oh, from what I understood, the study looks at infants/toddlers developing celiac and introduction of gluten, not when you were introduced to gluten and developed celiac when you were 20, 30, etc.

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A pediatrician and a nutritionist both (independently) said to introduce gluten to my guy like I would to any child and if he does not experience any changes in bowels, skin, vomitting, etc. to continue to give it to him - even though it's much easier to keep the whole house gluten-free.

My GI said they would not test (genetics) until past age 2.

I'm going to introduce oatmeal and wheat cereal soon (he's 6.5 month and doing great on rice cereal - he has had breastmilk and formula). I don't think I will make them staples of his diet (for my own benefit since I will be feeding him and I have celiac) but I will introduce them.

I've been weighing this in my mind carefully. It was a difficult and personal decision.

I will not give "new" foods when I am unable to watch him carefully to spot any reactions.

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My GI said they would not test (genetics) until past age 2.

Why? It is the only test valid before 2 years?

If you had the genetic tests and the baby was DQ2 or DQ8 would that change your mind?

As said earlier, it is every parents personal choice, I am just really trying to find out why, specifically what is the advantage when the disadvantages and risks seem so numerous.

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
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    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
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    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
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    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023