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

4 Year Old Possible Celiac

AngelGarza

Recommended Posts

AngelGarza Newbie
AngelGarza
Posted

My four year old has been suffering from chronic constipation, abdominal pain, enormous bowel movements, and extreme irritability for over 2 years. Her doctor could care less. Last week her grandmother and Aunt were both diagnosed with celiac disease and they suggested I try going gluten free. After 3 days my caught has had two NORMAL bm's and is like a completely different child. I just called her dr to see about getting a blood test and she refuses to do it, so I'm switching to a new dr and it takes about a month for my insurance to make the change. Should I continue the gluten-free diet while I wait to have her seen? And should my other kids be tested? My 2 year old is extremely tiny for her age so I'm worried about her as well. I have soooo many questions so I thank u all in advance for your help!

Angel

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

Celiac.com Sponsor (A8-M):


alex11602 Collaborator
alex11602
Posted

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

AngelGarza Newbie
AngelGarza
Posted
  • Author

For accurate testing you need to be consuming gluten and even then it is possible for a negative result. Also since you have family members who were diagnosed I would say for you and all your children to get tested.

Another thing is that since your daughter had positive results on the diet already after all testing is exhausted you may want to put her on a gluten free diet regardless of the test results.

Good luck with testing since it is my understanding that having positive test results can be beneficial when it comes to school and such. We don't have that problem since when I found out about celiac we decided to homeschool our children, but if you look through the parent of kids or babies section of the forum you may get a better idea of what testing involves and everything.

Good luck again.

I was afraid she would have to go back on gluten. :( Atleast we will know for sure what's going on.

M0Mto3 Rookie
M0Mto3
Posted

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

AngelGarza Newbie
AngelGarza
Posted
  • Author

Although it is tough to keep her on gluten, it is better to do it now. My little one is at the point that she may never get diagnosed. After a 2 month gluten challenge (which she did not tolerate) she still had negative bloodwork. Now, she is gluten free and healthy. I know that I would never put her back on it. She got a speck of gluten in her almond milk on Friday (carnation instant breakfast) and she isn't fully recovered, yet. Now I have to seek out a GI doc that might diagnose her without the bloodwork and endoscopy. She is still very young (17 months) so we have several years before we have to worry about needing the diagnosis for school.

She is already having problems after one day of being back on gluten. I found a nurse practitioner who specializes in gastroenterology. She wants her back on gluten for a month and we'll go from there. We only have until august to get this diagnosed before she starts school. But I plan to use this month to eat up all of her favorite gluten filled crap. The poor girl is obsessed with Taco Bell :(

AngelGarza Newbie
AngelGarza
Posted
  • Author

Oh, another question....The family members who were recently diagnosed are my husbands fam. But the more I read the more this disease sounds like my childhood. I was constantly at the dr for stomach aches, I vomited all the time, was extremely skinny with a distended belly (my cousins all used to call me the ethiopian kid), and always ended up in the er on thanksgiving. My drs all attributed my issues to being anemic, then as I got older they saud I was bulemic. My father has always had stomach issues as well. He has had bleeding ulcers a bunch of times. Abd his mother had 7 siblings who all died in their 40's and 50's from stomach cancer. Should I get tested as well?

alex11602 Collaborator
alex11602
Posted

I definitely would if I was you. I certainly couldn't hurt anything.

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

Celiac.com Sponsor (A8-M):


eluvsphish Newbie
eluvsphish
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

maramelia Newbie
maramelia
Posted

My doctor is also not understanding. I'm skipping a new pediatrician and going right to a gastro for my son. In the meantime, I just sent away for genetic testing through Enterolab. It was almost $200, but worth the peace of mind. The way I feel is that if he is carrying a gene, then he is going to have the disorder. (And since I just found out that I carry 2 genes too, then he will have at least one. But doctors respect you more when you have genetic proof too!)

But yes, I agree with others on this forum, keep the gluten for now so that you can have the blood test. But, don't give up if it's negative. My son's was negative and I don't believe it at all. He has been waaaaaay too much better since going gluten-free.

people, the genetic test is not everything like many and literature always says... sometimes it is negative, and the person do not have celiac disease, but some type of intolerance, sensibility, or whatever you want to call this thing...

my son example: short stature, few GI symptoms, always very small for his age, now 6yrs, wears 4T-5T clothes, and he has a negative EMA / a mild positive TTG and Marsh I = positive biopsy, and his HLA tests were surprisely negative !!! and he is improving (at least with GI symptoms...). my husband is 36yrs, always with an IBS diagnosis, and after we started the GDF because of our oldest boy (the 6yrs one), he dramaticaly improved of his diarhea symptoms... and before entering in GFD my husband did the blood exams, --- all negative!!!!! he didnt do the biopsy, and now, after eating no gluten, he told me: "i dont want to go back to that life!!!"

last saturday, we went to a japanese restaurant, and he ate (by mistake, he forgot this) a shimeji with probable gluten-shoyo... wow!!!! green diarrhea back! incredible, he was free of it after 3 weeks of gluten free diet... just because some small amounts of shoyo in a shimeji plate --- it was inclredible...

I say to you, its better mantain gluten diet for all that are possible to be celiacs, at least until the biopsy... because after staying with gluten free diet, then to come back to gluten is too bad, and you all will, never have an official diagnosis... unless you promise you will go back do gluten... (after get out of it, if you improve, its hard, very hard..., specially to our children...).

finally, i resume: keep on gluten diet, hurry to docs, do the blood exams and biopsies quickly, and then go definitively to GFD...

"when you taste caviar, its hard to go back to the daily common "butter"...:)))

good luck for all.

TBelle Newbie
TBelle
Posted

Just a note about the family question. My 3 children have been diagnosed with celiac disease so my husband and I both got gene tested to find out what side of the family it comes from (I have been told it's very unusual for 3 of my children to have celiac disease and the only one who doesnt yet is an ID twin so she has the gene) I just got the results back and my husband and I both have the same celiac disease gene so it could come from both sides of the family. It would be wise to get everyone in the family tested. Good Luck with it all

Archived

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

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


  • Member Statistics

    • Total Members
      128,181
    • Most Online (within 30 mins)
      7,748
    ViRose
    Newest Member
    ViRose
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...