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scaredparent

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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

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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! ;)

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  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
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      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
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      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
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      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
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      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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