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mum2 charlotte

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mum2 charlotte Newbie
mum2 charlotte
Posted

Hi everyone

I think my youngest daughter Charlotte may be gluten intolerant. She was an average weight when she was born but has failed to thrive since she was weaned around 5 - 6 mths. She has always had really soft mushy, sometimes watery bowel motions, up to 3 a day- has never passed anything "formed or solid".

She was referred at my request to a paediatrician who ran a series of blood tests which came back negative for celiac, but did show low iron levels. She is now taking an iron supplement, even though her diet is excellent and I can`t see how she could be lacking in iron.

The paediatrician doesn`t feel that she has any type of malabsorption or intolerance problem and the dietitian has started her on calorie supplements, which I believe may indeed help her to gain weight, but won`t help the problem long term. They seem to be dealing only with her failure to thrive, but aren`t concerned with the loose bowel motions, which the peadiatrician is referring to as "toddler diarrhoea".

I`m not totally convinced and have decided for my own peace of mind, against the advice of the dietitian, to try her on a gluten free diet for a short time to see if it makes a difference.

My problem is that I have no idea where to start. How long would she need to be on it before we should see a difference? What sorts of foods will I give her? I could come up with meals for a couple of days, but would soon run out of ideas.

Sorry for the long winded post but wanted to give all the information.

Any advice will be appreciated

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fripp017 Apprentice
fripp017
Posted

Hi. My children are in the process of being diagnosed as well. Doctors are still getting used to the idea of Celiac Disease. They aren't really sure how to test for it, how to know anyone has it for sure until they are very, very sick. So, I would keep trying. If you want to switch her onto the diet to test it, I think it would be less overwhelming than you think. When I switched to the gluten-free diet myself, I started noticing a difference in about 3 days. By the end of the week it seemed like I was a totally different person. There are all sorts of recipes online and many more foods available in stores today. They make gluten free snacks and foods to replace some of your regular meals. For example, most grocery stores carry brown rice pasta, mixes for cookies, pancakes, etc. I don't know if I helped, but my only real advice is, if you want a diagnosis then you have to keep going until you get the doctor that takes the time to explain the test results to you and to listen to you. If you just want to help her get better, then switch her to the diet.

mum2 charlotte Newbie
mum2 charlotte
Posted
  • Author

Hi

Thanks. Interesting that a difference may show in as little as a few days. My plan is to try the diet, then if I see a difference, then I can go back to the paed armed with evidence.

It seems that there are loads of foods out there that contain hidden gluten. I suppose it`s just a matter of research?

fripp017 Apprentice
fripp017
Posted

LOL! Yes, there is ALOT of hidden gluten! Some research and lots of label reading. The one thing I dread the most now that I am on the gluten-free diet is grocery shopping. It used to just be in and out, but now I spend most of my time checking the labels. Hints that I can give you - stay away from foods/products with: monosodium glutamate (flavor for chips, bbq sauce, snacks), modified food starch (corn, rice and potato are acceptable), and malt (often hidden in cereal that seems to be gluten-free but add malt for flavoring).

Best of Luck!

LexsMama Newbie
LexsMama
Posted
Hi everyone

I think my youngest daughter Charlotte may be gluten intolerant. She was an average weight when she was born but has failed to thrive since she was weaned around 5 - 6 mths. She has always had really soft mushy, sometimes watery bowel motions, up to 3 a day- has never passed anything "formed or solid".

She was referred at my request to a paediatrician who ran a series of blood tests which came back negative for celiac, but did show low iron levels. She is now taking an iron supplement, even though her diet is excellent and I can`t see how she could be lacking in iron.

The paediatrician doesn`t feel that she has any type of malabsorption or intolerance problem and the dietitian has started her on calorie supplements, which I believe may indeed help her to gain weight, but won`t help the problem long term. They seem to be dealing only with her failure to thrive, but aren`t concerned with the loose bowel motions, which the peadiatrician is referring to as "toddler diarrhoea".

I`m not totally convinced and have decided for my own peace of mind, against the advice of the dietitian, to try her on a gluten free diet for a short time to see if it makes a difference.

My problem is that I have no idea where to start. How long would she need to be on it before we should see a difference? What sorts of foods will I give her? I could come up with meals for a couple of days, but would soon run out of ideas.

Sorry for the long winded post but wanted to give all the information.

Any advice will be appreciated

My 15 month old was just diiagnosed w/ celiac and. Unfortunatly it tok us a year to get to here. The only way to truly diagnose celiac deasise is through a biopsy which my son had done. Before they would do the biopsy they had to run more blood and stool tests then I can count for more diseases than I can count. Its rough to get a diagnosis but just keep fighting the dr's until you find one that will listen. We were fortunate to be referred to a very good gi dr who not only listened but wasn't willing to give up when all the different tests they were running kept coming back normal. He looked @ my sons symptoms and his continued weight loss as a problem. We tried increased calories and when that still didn't help we kept digging for answers.

mum2 charlotte Newbie
mum2 charlotte
Posted
  • Author

Hi

What were your son`s symptoms?

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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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