Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

12 Month Old With Possible Celiac
0

12 posts in this topic

Hello I am new to this board and this subject. My daughter who is 12 months old may or may not have Celiac Disease. Any ideas would be a great help. She has been constipated and is the same weight that she was a 6 months old. She would scream for hours after eating wheat products and had terrible tantrums. So my husband and I took it upon our selves to cut out wheat. We went to see the Dr. today and they took some blood work and we have to go back in three weeks. He said that the symptoms we were telling him sounded like Celiac but because she is not "under weight" and the proper height that he is not sure. Since we stopped giving her wheat products the screaming fits have pretty much stopped and she is now having bowel movements. But he is not sure why the change in diet worked; he made it sound like if it was not Celiac that it may be a wheat allergy. I am so tired and confused. What is going on with my daughter if it is not Celiac then what is it. They took blood work and we go back in three weeks and if the blood work is positive they want to give her a biopsy (spelling) I don't think I am comfortable with that at all.

Ok any ways enough ranting

Thank you

Kindness

0

Share this post


Link to post
Share on other sites


Ads by Google:

It sounds like something's going on with wheat, but the blood tests might not prove it. If she had been off gluten for very long the tests might not be accurate. I also think I've heard that it's hard to get an accurate diagnosis on anybody younger than 18-24 months -- something to do with the antibodies in somebody that young.

If the tests come back negative but going off gluten cleared up all the problems then you'll have a choice to make.

0

Share this post


Link to post
Share on other sites

Dear Kindness,

You can email &/or speak by phone with Dr. Kenneth Fine, M.D. (gastroenterologist who has gluten intolerance himself, as does his daughter).

Dr. Fine started a lab called EnteroLab, that does stool sample testing, looking for the presence or absence of antibodies to gluten, in patients' stool samples. Dr. Fine could tell you whether such testing would be reliable in your daughter's case or not. Here's a link to his website:

http://www.finerhealth.com

Another thing you can consider doing, is to keep your daughter gluten-free, until she is older. If she continues to do well, being on a Gluten-free diet, you'll have your answer--stay gluten-free. (avoid glutenous foods such as anything containing wheat, rye, barley, & oats & buckwheat. Brown rice is gluten-free. Corn is also gluten-free, but some children are intolerant of corn, so it may be good to avoid corn, at this time.) If she wants to do a gluten challenge, when she is an adult, that would be an option, at that time.

Carol

http://cantbreathesuspectvcd.com

0

Share this post


Link to post
Share on other sites

Kindness, With the change in her behavior and health just by not eating wheat, you have your answer. Many times, the tests will come back negative. It means very little. Gluten Intolerance could actually be what she has, which is usually the forerunner of Celiac. Just keep her off gluten. When she is older, explain to her what you told us. Maybe the doctor will find something, which is always helpful.

FYI: Oats and buckwheat are gluten-free. Oats are not always tolerated well, so you have to watch for reactions.

0

Share this post


Link to post
Share on other sites

Thank you all for your input and advice it is just so hard when you are trying to figure out what is wrong with a child who can not tell you. I think that you are right that even if the test come back negative that we will keep her wheat and gluten free until she is old enough to try going back on herself. I am so convinced that if the test come back negative that they will look at me like you are just making this all up and be like oh well you are just an overly concerned mother. I have had that reaction before. Thank you all you made me feel so much better about this whole thing. I would have never known that the chances of the test coming back negative and if and they do I would have just been even more frustrated. It is just so frustrating and worrying plus the doctor just said that he thought it might be Celiac and then did not tell me any thing else about it. Not even what other names wheat and Gluten can be found under. I am glad that I found this site.

Thank you all again

Kindness

0

Share this post


Link to post
Share on other sites




In reading about what foods have gluten, and what foods don't, there seem to be several opinions (some conflicting) about what foods are safe, and what foods are not safe, for gluten intolerant people. Dr. Fine recommends avoiding ALL grains.

Here's what I have read. If any of this is not correct, please let me know:

Glutenous foods include certain grains in the grass (graminae) family, and these glutenous grains include wheat, rye, barley, and triticale (a hybrid of wheat & rye).

Wheat includes spelt & kamut (ancient forms of wheat). Wheat also includes farina, wheatina, semolina, bulgur, durum, etc. Malt is glutenous, if made from barley (so avoid beer made with barley malt). "Natural flavorings" might contain gluten. "Starch" may contain gluten.

Oats are controversial. Some Celiac & Gluten Intolerance groups say to avoid oats, because of 2 main reasons:

1) Oats may have proteins in them that are somewhat similar to gluten, and this may cause problems for gluten intolerant people. (But some groups dispute this).

2) Oats can be contaminated at processing plants, with gluten from wheat, rye, barley, if these glutenous grains happen to also be processed at these plants (factories).

The following foods also seem to be somewhat controversial:

Buckwheat is not a true "grain" (it's in a different plant family from the "graminae"/grass family). But, buckwheat (also called "kasha") may have gluten-like proteins in it (I think), that can bother some gluten intolerant people.

Buckwheat can be contaminated with gluten, if processed in the same factory as wheat, rye, barley, triticale (glutenous grains).

Some Celicac groups & Gluten intolerant groups say buckwheat is OK to eat. Other groups put buckwheat into their "gray" areas of possibly "no-no" foods.

Millet is in the grass (graminae) family, and I believe, has no gluten in it. Millet is tolerated well by some gluten intolerant people, but not by others.

Tef is an Ethiopian tiny grain, that is in the grass (graminae) family. I don't know if Tef is glutenous or not.

Sorgum/Sorghum is also in the grass (graminae) family. I don't know if it has any gluten in it or not. Special Elisa (?) testing to see if it is glutenous, appears to not be sensitive enough to detect possibly very low levels of gluten.

Quinoa and Amaranth are seeds that may or may not bother gluten intolerant people.

Wild Rice (grown in lakes in Minnesota, etc.) is in the grass (graminae) family, and I think Wild Rice is gluten-free. Is Wild Rice gluten-free?

RICE IS GLUTEN-FREE, and is tolerated well by most gluten intolerant people, unless one is "allergic" to rice. Brown rice is more nutritious than white (denatured) rice. Brown rice can be used to make breads, cookies, crackers, cakes, pastas, cereal, gravies, etc.

Corn is also gluten-free, and is tolerated well by some gluten intolerant people. But, some people are intolerant to corn, and should avoid corn. This includes corn syrup, found in some baby formulas!

And, if all this is not confusing enough, people can be intolerant of other foods, like SOY, and COW'S MILK!

It may be easiest (and safest) to either avoid all grains, or, just use brown rice. What do you all think?

Carol

http://cantbreathesuspectvcd.com

0

Share this post


Link to post
Share on other sites

HI, my name is dorothy and I have an 11 month old son named Evan. As I started him on solids he would occasionally get diarrhea and I thought it was just from trying new foods. the diarrhea would always clear up once I put him back on formula and rice for a few days. then I noticed the diarrhea usually coincided with relatives visiting, when for some reason we always tended to feed him more wheat. I finally stopped giving him gluten containing foods and the diarrhea went away. I mentioned this to his doctor and she rec.gliadin IgG and IgA and tissue transglutinase antibody IgA. I took him to have his blood drawn and the phlebotomists were unsuccessful (he does have chubby arms). I just read something about needing to eat gluten for a certain period of time before test results will be diagnostic. my doctor did not mention this and how can it be healthy anyway for an 11 month old to have blowout diarrhea for a week or more?

I would like any opinions on these tests and also any advice on dealing with friends/relatives who still give him wheat when I specifically ask them not to. Any advice will be greatly appreciated.

-dotandevan

0

Share this post


Link to post
Share on other sites

Hi Dorthy,

When my daughter, Evelyn, was just being tested I remember them getting blood from her foot because they too were unsuccessful with her veins. Her blood tests were inconclusive (more common with young celiacs). The veins integrity is severly diminished by the effects of celiac (malnutrition). Even if Even is chubby in some places, that doesn't mean that he's absorbing all he needs to to be healthy. I would recommend you look into Enterolab. It is much less invasive than the traditional blood test/biopsy. Since he responds to the gluten free diet, it seems you have your answer. I'm not sure about whether or not you need gluten in the diet for the Enterolab tests, someone else on the board might be able to help with that.

As for your friends and relatives....I started explaining to ours that eating gluten for Evelyn gives her "food poisoning", imagine living with food poisoning every day of your life. This was the only way I could bring home the point that feeding her gluten was hurting her. Get as much information as you can and share it with them. If they won't read it or take an interest in it, don't let them feed him! A lot of times they just don't think. I remember my mother-in-law putting away our left over gluten-free hamburgers into a used and unclean wheat bread bag...ugh!

The best thing you can do is educate yourself and take complete control over his diet.

I have learned now that it has been a blessing for Evelyn to be diagnosed so young, she doesn't have a taste for gluten and has no problems not eating it when her friends and siblings are.

Hope that helps!

RaeAnn

0

Share this post


Link to post
Share on other sites

RaeAnn,

Thanks for the advice on communicating with relatives. I am thankful it only took me a few months to figure out that gluten was giving him problems. And all that junk food and processed food he won't be eating! maybe it's a blessing in disguise and we should all go gluten free.

-Dorothy

0

Share this post


Link to post
Share on other sites

There seems to be some confusion about what has gluten and what does not.

Buckwheat, despite it's unfortunate name, is not related to wheat and has no gluten. It is related to rhubarb and is absolutely fine for a gluten free diet.

Millet, Tef, Sorghum (Jowar), Quinoa, Amaranth, and Wild Rice are all Gluten Free.

Brown Rice (and all rice) is gluten free.

Soy is gluten free. On a separate note, soy is one of the top 9 allergens so some people cannot tolerate soy, but this is unrelated to gluten or celiac.

Corn is gluten free. If a celiac has a problem with corn, that is separate and unrelated to celiac or gluten -- perhaps an allergy.

The only questionable is oats, which are still not recommended in America or Canada for gluten intolerant people, for the reasons listed by Carol. Because of cross-contamination issues, specifically in the fields and processing plants, American oats very often do contain gluten.

0

Share this post


Link to post
Share on other sites

Kindness,

Don't worry if they look at you like you are crazy! They do not live with this child 24/7 YOU do.

YOU know your child!!!! There is no one on earth who knows her better. YOU are the expert on your child and don't let anyone tell you different.

I can sympathise with you! It is very hard to try to weigh out other's opinions and get to the root of what is wrong with your child. You know something is not right and others who don't know your child as well as you can not truely understand that.

I am struggling as well with getting doctors to listen and truely understand that something is not right with my two year old.. It''s been nearly a year now.

So keep at it.

At the point you get the tests back you may need to make a choice. It sounds like you have made that choice already to keep your daughter off gluten. Stick to it if that is your decision. Don't let anyone disuade you from that position.

I wish you well!

Denise

0

Share this post


Link to post
Share on other sites

Hey guys sorry it has taken me so long to reply things have been nuts and the Dr.s have been driving me nuts. I really appreciate all the support you all have been giving me. Things have gotten better my daughter is still Gluten free. But of course her blood work came back negative for Celiac's. She had been gluten free for a couple of weeks at that point. So they gave me a referral to a GI specialist who we go see in October. We had another appointment to get my daughter weighed again today (her last appt was in May) well she has not gained any weight at all. She got taller though, she has gotten a hold of some food that had gluten in it a month ago and holy cow did she scream and was constipated. So I told the Dr.s that if it is not Celiac's then it is one hell of sensitivity to wheat and Gluten. So they said in mid September before we go and see the GI Dr. to put her back on Gluten and wheat. I looked at them like they were nuts. They want us to put her on Gluten for a whole month before we see the GI Dr. who I have been told is not even sure that he wants to do a biopsy. (Scream). Oh and to top it all off the last appt we had in May they failed to mention that my daughter was anemic. And I just found out that a very serious form of Anemia runs in my family I have even had a couple relatives die from it. I feel crazy!!!!! I am so ticked off. I know they don't believe me when I tell them that she is 100% better since I took her off Gluten and Wheat. They just don't know why she is not gaining weight. UMMM maybe if I had known she was anemic I could have taken care of that. I don't know what to do anymore. I know that I am going to keep her off Gluten until she is older. I can not handle a month knowing that my daughter will be in pain screaming, constipated and the tantrums. UGH!!!! My husband and I are thinking of taking her to a Naturopath or driving 3 hours to a very large City with a children

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,333
  • Topics

  • Posts

    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined