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

Family Thinks I Am Nuts..=)

norahsmommy

Recommended Posts

norahsmommy Enthusiast
norahsmommy
Posted

Basically as soon as my daughter started eating gerber puffs (now including wheat flour), bits of cracker, bread and pasta bits we have had endless crankiness, screaming fits, temper fits, painful bm's that are either hard, or normal consistancy but still painful, 3-9 days between bm's, rashes, and funny colored foul smelling poo (greyish white-whiteish yellow, streaks of mucous with blood.)I took her off gluten after a hunch and she is doing much better, unless I mess up! She went to the allergist today and it was so disappointing. All he did was a skin test. She is allergic to none of the 40 somthing things he tested for including wheat. I somehow knew she would be negative for all that stuff because in my heart I know she is gluten intolerant. I talked about that with him and he said not to feed her gluten and dairy for 3 months then come back for more tests and see if she can handle gluten then. He said she is still so young (12 months) that she will change alot and may be able to handle those things then. He diagnosed her with 'delicate tummy' =). So I went home thinking she may not have celiac or anything really serious. My mil thinks that my thinking celiac at all is just terrible and I need to think positive and stop jumping to the worst possible conclusion. I fed my daughter some oatmeal I made yesterday and noticed she was really cranky all day. I thought it was just due to all the doc stuff. She pooped in the night and it was foul and difficult for her to pass. SHe pooped in the morning and she gasped and cried and strained and it was firm with bloody moucus streaks in it. She pooped this evening and it was so painful she was again gasping and writhing and trying to crawl up me to get away from it. This poop was firm and whitish mustard with white streaks in it. When she was done pooping her skin was clammy and she was breathing hard and clung to me and fell asleep (basically passed out). This is what happens when she gets gluten for more than a day. So I was searching my brain trying to find the source. I cleaned her up and put her to bed and made some tea. We were out of honey so I used some sugar. The sugar jar had FLOUR on the rim! I used to bake alot and haven't used the sugar jar in a long time. When I did I used the same scoop for wheat flour and sugar. I had used sugar in the oatmeal I fed her today and yesterday! So that is where she got it. I feel so bad for her, mommy messed her up =(. So its stuff like THAT that makes me realize she DOES have a problem and I need to keep her gluten free. Now I just need to help MIL realize this. My daughter is spending a night and all day with her while I take my mom and dad to his knee replacement surgery on monday. I am worried she will get contaminated food. I plan on making alot of little packets of 'safe' food. I just hope she gives them to her.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Was it oats labelled gluten-free? Regular oatmeal is most likely contaminated with wheat. Also, some Celiacs cannot tolerate oats as its protein is similiar to the gluten protein in wheat. Might want to skip the oatmeal and clean the sugar bowl, Mommy. You didn't do it on purpose.

If your MIL won't feed your daughter like you want her to be fed (Kosher, Vegetarian, gluten-free, whatever) she can't be allowed to take care of her again. Your daughter's health is too important.

dilettantesteph Collaborator
dilettantesteph
Posted

It sounds like you should be getting tests for celiac disease and not for allergies. I don't think that they work very well for someone that young. To get an accurate test she has to be eating gluten.

Just so that you know, some 10% of celiacs get a gluten like reaction from oatmeal. I'm one of them. That might be what happened rather than or as well as the flour in the sugar.

It sounds like you have some challenges ahead. I hope that you will get the support that you need.

Kay DH Apprentice
Kay DH
Posted

Would it make a difference with your MIL if you had a note from the doctor saying to keep you daughter off gluten until the next test? If so, then you would still need to have gluten-free foods for your daughter. CC is such a problems with gluten intolerance. I even have had problems with labeled gluten-free foods that were "processed in a plant that also processes wheat...", and there is a lot of hidden gluten in foods (hydrolyzed vegetable protein, etc.).

cassP Contributor
cassP
Posted

It sounds like you should be getting tests for celiac disease and not for allergies. I don't think that they work very well for someone that young. To get an accurate test she has to be eating gluten.

Just so that you know, some 10% of celiacs get a gluten like reaction from oatmeal. I'm one of them. That might be what happened rather than or as well as the flour in the sugar.

It sounds like you have some challenges ahead. I hope that you will get the support that you need.

OMG IM SO SORRY.. i was trying to hit the +1 and i slipped :( i cant delete it huh??? omg.. crap i feel bad

- i just had to go find another post of yours to correct your "count"... again, im so sorry :/

norahsmommy Enthusiast
norahsmommy
Posted
  • Author

Was it oats labelled gluten-free? Regular oatmeal is most likely contaminated with wheat. Also, some Celiacs cannot tolerate oats as its protein is similiar to the gluten protein in wheat. Might want to skip the oatmeal and clean the sugar bowl, Mommy. You didn't do it on purpose.

If your MIL won't feed your daughter like you want her to be fed (Kosher, Vegetarian, gluten-free, whatever) she can't be allowed to take care of her again. Your daughter's health is too important.

They are labled gluten free. Maybe she is having trouble with oats. I have given her oatmeal several times and she has had issues but I though it was the milk I put in it. I left out the milk this time and I thought it was the contaminated flour. Maybe its oats too. So no more oats for a while so we can see.

lovegrov Collaborator
lovegrov
Posted

A celiac test for one this young would be useless. You'll have to go with your instincts.

richard

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

OMG IM SO SORRY.. i was trying to hit the +1 and i slipped :( i cant delete it huh??? omg.. crap i feel bad

- i just had to go find another post of yours to correct your "count"... again, im so sorry :/

That's just funny. Don't worry about it. :)

ScullyFord Newbie
ScullyFord
Posted

STOP feeding honey NOW. Its TOXIC to babies. It may be other things but STOP the honey NOW.

psawyer Proficient
psawyer
Posted

STOP feeding honey NOW. Its TOXIC to babies. It may be other things but STOP the honey NOW.

Please provide the source for this assertion. Provide it NOW, please.

jerseyangel Proficient
jerseyangel
Posted

Feeding honey to babies under 12 months puts them at potential risk for infant botulism--

Open Original Shared Link

Roda Rising Star
Roda
Posted

I know what you mean about testing negative for allergies. My youngest was just retested (his third time) and no reactions whatsoever. I am finally convincing my husband that I think the root of his sinus problems is food related. Our new allergist is thinking somekind of food intolerence and is going to get him retested for celiac. I had him tested two years ago but the lab messed up and he didn't get all the testing. However, even if the blood tests are negative I may work with the allergist on an elimination diet for him. It sounds like you have found what is bothering your little one. Tests at that age can be very innacurate even so on my almost 6 year old. It is a really big learning curve, especially was for me, and I think it is harder for a little one and it sounds like you are doing a good job. I would also second eliminating the oats. I react badly to certified gluten free oats also.

ScullyFord Newbie
ScullyFord
Posted

Please provide the source for this assertion. Provide it NOW, please.

call your pediatrician. call your pharmacist. google it. the babys symptoms are classic reaction to honey. im on a cell phone and cant send you links. make the phone call. and some babies cant tolerate honey until about 2 years old. restrict honey. reintroduce it at 18 months and watch for reaction. if reaction, restrict again until 24 months. it is HIGHLY TOXIC.

tarnalberry Community Regular
tarnalberry
Posted

Please provide the source for this assertion. Provide it NOW, please.

It is standard advice from every source I've ever read not to feed honey to kids under 12 months, due to the fact that honey often harbors small quantities of botulism spores, and their little immune systems aren't yet capabable of handling the load. (There is similar advice for immunocompromised patients to avoid honey for the same reason.)

That said, the daughter is a year old, and if the honey is cooked (as it may (or may not) have been in the oatmeal, it would be fine.

To the OP - if putting your hand on a hot stove repeatedly hurts, why would you keep doing it? If someone didn't believe that it hurts, would you then say "oh, it must not really be hurting, despite what I feel" and start putting your hand on the hot stove?

You see what you see, repeatedly. You're not making up her poop. Trust your instincts, and to heck with anyone else who thinks they know your child better than you do.

dilettantesteph Collaborator
dilettantesteph
Posted

STOP feeding honey NOW. Its TOXIC to babies. It may be other things but STOP the honey NOW.

If you reread the post it looks like the mother was putting honey in her own tea, not feeding it to the baby who is now over 12 months anyway.

psawyer Proficient
psawyer
Posted

If you reread the post it looks like the mother was putting honey in her own tea, not feeding it to the baby who is now over 12 months anyway.

That was my take as well. Honey in mom's tea is toxic to a one-year-old? :unsure:

ScullyFord Newbie
ScullyFord
Posted

That was my take as well. Honey in mom's tea is toxic to a one-year-old? :unsure:

she feeds kid oatmeal. sweetens it. states shes not used sugar in a long time which leaves impression shes been using honey in past to sweeten oatmeal but last 2 times used sugar because no honey in the house.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,702
    • Most Online (within 30 mins)
      7,748
    Coach Chris
    Newest Member
    Coach Chris
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.