Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I Need Help

scaredparent

Recommended Posts

scaredparent Apprentice
scaredparent
Posted

I have a 15 mo old son that they think has celiac disease. I am reading other profiles and it sounds just like all of your kids. I was seeing that it is almost impossible to diagnois befor 18 mo. My son has had trouble since he started on cereral at 3 mo old. Up until that age he was gaining weight just fine and then he has slowed way down. He had the lab work done yesterday and a biopsy scheduled for Nov 3 and also a colonoscopy and a dumping sereies. Should I have the test done now or wait till he is 18 mo old. I was also woundering if any of you have other kids I have 5 total children and do you make them all go the diet also. And how do you every get to go out to eat. Help I am so scared of all of this HELLLLP

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

Celiac.com Sponsor (A8-M):


Mom22 Apprentice
Mom22
Posted

I can't answer on your concern about how early a child can be tested as both our children were diagnosed this year. Our daughter is 4 and our son is 9. Our son was the one that was having problems, had bloodwork, biopsy, etc and was diagnosed with celiac disease. Because of the genetic link, we had blood work done on our daughter (who exhibited no symtoms that we were aware of), which showed elevated levels of IGG, IGA and TTG and were actually double of those of our son. Within a 1 week period, our son's biopsy was positive and our daughter's blood work showed concern. It was quite an overwhelming week. :o Thus, she had biopsy, which was positive. My husband is in process of being diagnosed or if he just has the genetic makeup for the possiblity of it. He is currently doctoring with Dr. Fasano at the University of MD. I know when our son was diagnosed, it was very overwhelming and as a mother understand the concern that you have for your children. My advice would be to wait on your son's results before you put the entire family on a gluten free diet, but also, if you wish to pursue testing for the other children, they need to be consuming gluten until they have a biopsy. As far as going out to eat, we did that on a weekly basis prior to the diagnosis of celiac. We do not go out to eat very often anymore <_< and requires alot of planning. If we do go out, it is McDonald's cheesburger happy meal with no bun, FF, soda and hot fudge sundae for dessert. It is definately a change of lifestyle, but after 6 months of gluten free, it seems second hand and don't feel overwhelmed. Good luck! Mom 2 2 :D

3boyzmom Newbie
3boyzmom
Posted

Just wanted to give you some encouragement. I am a mother of 4 and, I have a son who is definitely gluten intolerant, as for the other 3...???

We might have been able to diagnose our son at 15 months if I or the doctor we were seeing at the time had any clue about Celiac disease. The telltale symptoms, for my son, at that age were:

loss of weight and height (went from being in the 80% to the 15%)

frequent loose stools (I thought it was from lactose intolerance)

bloated belly (thought IT was from gas from lactose intolerance)

clingy, whiny moody behavior (would wake up from afternoon naps VERY upset)

For more of Open Original Shared Link, you can read the post I have over at Braintalk.

It is possible to detect an intolerance to gluten at that age... as I have encountered many who have. Whether or not they are successful at finding the patch in the small intestines that has the damage and give you a diagnosis of Celiac disease is unsure. From what I understand the damage can be patchy and not visible to the naked eye, therefore it can easily be missed in an endoscopy/biopsy.

I would recommend having your other children tested via the blood work. Elevated IgG would indicate a gluten intolerance... elevated IgA with IgG would indicate that there is possible damage from the gluten intolerance and possible celiac disease.

Going out to eat is a risky venture... specially when you have a little one who can't tell you whether or not they've been 'glutenned.' My son is 4 years old now, and we try to only go to restaurants that we know to have gluten-free stuff... we ask at our favorite establishments and then determine from there... it's tough... the chance of cross-contamination is high... the price you pay for eating out.

My best advice for you is to NOT to try to just replace gluten stuff with non-gluten stuff. Try to make a diet change into whole natural foods. It will be better for your whole family. Fixing dinners that are not from a box or can is better anyways. Crockpot cooking is great. There are tons of things that can be done with chicken, and beef in a crockpot that is gluten free. Remember, potaotes and rice are still in, along with fruits and veggies! The only thing that is good looking for a suitable replacement for is pasta. The things that are nice for replacing for occasional treats, is cookies, cakes and such.

I wish you luck and if you have any questions and concerns, just post 'em! There are tons of moms, dads and families on these boards who are happy to offer up their advice and opinions.

God bless,

(Personal disclaimer: I am NOT a doctor, nor do I play one on t.v.! :) I am just a mother of a gluten intolerant child who has read and chatted with others in the same boat. Please feel free to challenge me or point me towards any research and information, I'm always searching!)

Priscilla :)

"Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing." --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

Kyle - 6

Matthew - 4 (Gluten Free since 11/03)

Andrew - 2 (Gluten Free since 7/04)

Abigail - 7 months (staying gluten-free until ?)

My hands are full, but my heart is not! ;)

Archived

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

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


  • Member Statistics

    • Total Members
      130,200
    • Most Online (within 30 mins)
      7,748
    vickymd
    Newest Member
    vickymd
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      It says normal is less than 5. 
    • RMJ
      Is tTG 9 normal after 4 months gluten-free?

      By RMJ · Posted

      The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect.  For example, you might see <2. What is the normal range for your daughter’s test?  Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from more than 100 to 9 in a few months is great! Good job, mom.
    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      My daughter has been gluten-free about 4 months. Prior, her tTG was over 100 (test maxed at 100). Her liver, iron, vit d are all normal again and she has grown 2 inches and gained 4.5 pounds in just 4 months! It's amazing. But her tTG is still at 9. Is that normal or should it be zero? Is she still getting gluten? We are SO strict. We don't eat out.  She was previously having tummy pain still. I cut oats completely 3 weeks ago and that is gone.  Can gluten-free oats raise tTG? Would I know based on symptoms? I was going to try her on oats again now that she doesn't say her tummy hurts anymore.  Also, our house is gluten free apart from one loaf of bread my husband uses. He makes sandwiches on a plate then puts it in the dishwasher. Yesterday when my celiac kids weren't home, my youngest and I ate "real" pasta. I was SO careful. All pans went in the dishwasher, I didn't spill any, I cleaned the sink I drained it in. Today my girl has her dermatitis herpetiformis rash back and had a huge hour long meltdown then fell asleep. Just like before diagnosis. Is it that hard to avoid cross contamination? Will one crumb off the plate or me cooking pasta when she's not home get her?  Again, we do not eat out, she's not in school yet, and she doesn't eat anything I don't give her. 
    • knitty kitty
      TTG IgA and IGA elevated mildy

      By knitty kitty · Posted

      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      New to gluten free living, in5ro and small question

      By trents · Posted

      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
×
×
  • Create New...