Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Breastfeeding Baby With Possible Celiac

BethHS

Recommended Posts

BethHS Newbie
BethHS
Posted

I have a 9 month old baby who has been breastfed since birth. He's growing well and thriving. My husband is gluten-intolerant, so we knew that could be a possibility for our son as well. I had read that breastfeeding can offer some protection against celiac disease, which is part of the reason I wanted to make sure I breastfed him as long as possible.

We started our son, Lance on solids at 6 months, but I decided to hold off on wheat. We were also concerned about possible allergies since he has a touch of mild eczema. However, when we introduced him to wheat recently, he got a rash on his cheeks and his back got really red. I thought maybe that was an allergic reaction, so of course we cut out the wheat.

Lance had his 9 month well baby appointment recently, and I asked the doctor about the reaction, and he thought it sounded like it would be more likely that the rash was related to possible Celiac and not an allergy, mostly because of family history. He suggested that we cut out gluten for now, and that eventually we all get the blood test for Celiac. In order to get tested, I know that would mean that my husband and Lance would both have to introduce wheat into their diet, right? It doesn't really seem worth it... doesn't it take awhile to cause the damage again?

Also, should I cut gluten out myself since I'm still breastfeeding? I had asked a LC about this before Lance was born and she didn't seem to think it was necessary.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

In my experience, eczema is always a reaction to food somebody is intolerant to. I expect that your son has that mild eczema because you are still eating gluten. And yes, it is very necessary for the mother to stop eating gluten when the baby is gluten intolerant, because gluten WILL be in the breastmilk otherwise.

I agree with your doctor that your son's awful rash is likely caused by a reaction to gluten, and that it is an intolerance rather than an allergy.

But I think it is a terrible idea to try to destroy the villi in both your husband and child for celiac disease testing! To purposely make them sick just to confirm what is already known is unconscionable in my opinion.

It would likely take years of eating gluten before your son would test positive. In those years he would likely be very ill, not to mention stop growing, having mental problems like ADHD and possible autism, and he could develop diabetes. And those are just some of the things that could happen.

Is it worth it? No way! If your son reacts to gluten now, he always will. You simply don't outgrow a gluten intolerance.

ShayBraMom Apprentice
ShayBraMom
Posted

Why take him off now and then get him sick again? Baasic bloodstest for Celiac involve a genetest anyway, the common Genes linked to Celiac s are DQ2 and DQ8, for that neither your husband nor your son need to be on gluten at all since the genes are not influenced by what you eat. My little daughter never had the scoping, because I'd taken her off the gluten, she was off for a good wekk when the doc told me that I would have to put her back on it for 3 month!!!!!! before he'd do a scope on her. I think he could have still done it since damage doesn't heal THAT fast (it took my daugher 6 month before she started tolerating all kinds of others foods again, it took that long ofr her to heal)- but I wans't smart aobut it back then! Eitherway, she had so many signs pointing to Celiacs, even her teeth when they came out looked like glass like they often do in infants if they have celiacs (later on often yellow ect.), her antibodytest in Stool with EnteroLab showed less then 10 is negative, she had more then 69 Units of antibodys and was officially labeled as Glutensensitive (only a scope would get her an official diagnosis, the way of treatment is the same though- Off of gluten life long- so it didn't matter). shes dong great on glutenfree, if she for some reason gets glutened, other places outside the home it still can happen no matter how carefull, I know because aobut a day or so after she gets yellow, slimey , VERY stinky poo and foul gas, not to mention the discomfort she gets and bad mood!

In my experience, eczema is always a reaction to food somebody is intolerant to. I expect that your son has that mild eczema because you are still eating gluten. And yes, it is very necessary for the mother to stop eating gluten when the baby is gluten intolerant, because gluten WILL be in the breastmilk otherwise.

I agree with your doctor that your son's awful rash is likely caused by a reaction to gluten, and that it is an intolerance rather than an allergy.

But I think it is a terrible idea to try to destroy the villi in both your husband and child for celiac disease testing! To purposely make them sick just to confirm what is already known is unconscionable in my opinion.

It would likely take years of eating gluten before your son would test positive. In those years he would likely be very ill, not to mention stop growing, having mental problems like ADHD and possible autism, and he could develop diabetes. And those are just some of the things that could happen.

Is it worth it? No way! If your son reacts to gluten now, he always will. You simply don't outgrow a gluten intolerance.

Rook's Mommy Apprentice
Rook's Mommy
Posted

Our sons doctor wanted us to test him as well. We refused. From what I read the test is iffy that young. But we know that this is the most important time for brain development. He can be tested later on. What is most important now is that he grows properly.

I had to give up gluten as well but we found out before he was eating solids. I have been gluten free since he was six months old. I would try going gluten-free for awhile and see if it makes a difference.

BethHS Newbie
BethHS
Posted
  • Author

I will go gluten-free until I'm done nursing, which shouldn't be too hard since most of my meals are gluten-free anyway, since my husband has been gluten-free for a couple years now. My son really hasn't had a lot of symptoms besides the mild eczema that seems to be getting better all the time, and the flare up with the wheat. I know symptoms are different for everyone, but he has never had diahrrea, his teeth look normal, and he's growing normally. My concern is the symptoms that he has are also somewhat consistent with a wheat allergy. I'm wondering if we should get him allergy tested when he's a little older, and if he doesn't test positive for that, assume that he probably has Celiac. I think at this point it doesn't seem worth it to have him or my husband get back on gluten to get tested. My husband was so miserable before he cut it out, I can't imagine him doing that again for 3 months.

slmprofesseur Apprentice
slmprofesseur
Posted

My DS does have a wheat allergy. He had the eczema all over his body. The longer he ate wheat the worse the symptoms got. It started with the rash then went to runny stools, wheezing, colic, crankiness, slow weigh gain. He was tested at 8 mos old for a wheat allergy. The allergist said that meant I had to avoid all of these foods (wheat, eggs, nuts..) until he was weaned. I noticed a big difference.

DS was tested (RAST/Skin) at 18 mos and has NOT outgrown his allergies. I tried wheat free for a while but still had rashes. So then we went gluten free and wheezing. rashes stopped. HTH!

Kibbie Contributor
Kibbie
Posted

My daughter was diagnosed at 18 months and I nursed exclusively until we introduced solids at 6 months old. (then continued to nurse her until she was 13 months) Like you we held of on wheat products however but I did introduce oats to her diet around 7 or 8 months. She's always had skin issues even when she was only receiving breast milk. She gets a rash on her bottom that is red

I have a friend who's son 9 months old has a wheat allergy (5 on the RAS test) and he has never been introduced to Wheat. His only exposure to this was via breast milk so it is possible for your son to have a reaction the gluten in your breastmilk. Because of his moms food allergies and his multiple food allergies (combined they have a wheat, oats, corn, dairy, soy, egg, and nut allergy) she was not able to produce enough milk on that "free from allergy" diet to support him so they are giving him formula now.

As far as putting everyone back on gluten to test them that is entirely up to you. You may want to look into the genetic testing and see if they have the markers for Celiac disease if they do then you can assume a positive result from a gluten free diet means they were positive. If its just an allergy they can test that with out you giving them gluten products.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    2. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    4. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,298
    • Most Online (within 30 mins)
      7,748
    drewbee2294
    Newest Member
    drewbee2294
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.