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Need Opinion On My Daughter

scaredparent

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scaredparent Apprentice
scaredparent
Posted

Hi I have a son who is 23 mo old and has been gluten-free since Febuary and is do well. We have not seen much weight gain but he doesn't have diahrea any more :D . My son had a postiive dietary change and negeitive test results on blood and biopsy. ( I think because he was to young for postitive result).

Here is my problem. I have 5 children and child number 2 and 5 are sick all the time. Number 5 is Braunson the 23 mo old and Brittani is number 2 and she is 7. She has a lot of medical problems like constipated all the time she can be on laxitive 3 times a day with no results. She gets sinus imfections all the time. She was dx with a immudificency problem at the age of 2. She has had 14 surgeries and close to 50 iv's for medications 3 picc line and 2 portacathiders. And to make a long story short she has had Igg panels ran at the age of 2 and I got a hold of them the other day and found out that she had an abnormal IgA level. It was not realllly bad but a bit abnormal.

Is one of the test for celiac disease the IgA test? If so what number indicates celiac disease? Did any one else of trouble with sinus infections and constipation and then get dx with celiac disease? I am debating on putting her through the biopsy and the rest of the blood work. She often looks bloated and pregant. She has never been under wieght. She weight 83 lbs and is 54 in tall and will be 8 in August. But she was anemic at age 1. Can celiac disease run from one extreme to the other in the same family? Any opinion on what I should do? Any ones opinion is welcomed and appeciated? Sorry for the long questions ? Thanks for the help in advance

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KaitiUSA Enthusiast
KaitiUSA
Posted

I sent you a PM in regards to your question you had for me. I tried to respond to the email but it said something about your email address being down and sent it right back so I used the PM..hope you got it

Anyways, yes it sure can be in families like that.

The full panel of celiac disease is the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG and EMA are very specific for celiac. If she did not have these done then she should. A false reading on these are very slim to none chance. She should be continuing a gluten filled diet until after testing though.

When you have antibodies on the regular IgA this means your body is having some reaction to gluten so in my opinion it should be investigated further.

Constipation is a very common symptom in celiac actually. I had it before diagnosis. Some doctors seem to think if you don't have diarrhea or certain symptoms then you don't have it but that is completely false.

Also, her being anemic is another big sign. Anemia is also a symptom of celiac.

Hope this helps a bit and let me know if I can help you out.

Boojca Apprentice
Boojca
Posted

My son is 3, he was diagnosed a year ago exactly (endoscopy anniversary was yesterday, actually) at age 2 1/2. Definitely have your other children tested. It sounds like celiac disease to me, and I have yet to hear anyone who has the exact same symptoms...and some don't ever have ANY symptoms.

It can't hurt to get them tested, but it sure could hurt not to!

Bridget

VydorScope Proficient
VydorScope
Posted

The way I see it, since this is a gentic thing, If anyone one person inyour direct blood line has celiac disease, you all should be tested.

lbsteenwyk Explorer
lbsteenwyk
Posted

Your older child's symptoms sound exactly like celiac disease to me. One of my daughter's symptoms was SEVERE constipation. I would instist that your pediatrician to a complete celiac panel on her.

Regarding your younger child, be aware that the weight gain can come slowly. My daughter started on a gluten-free diet at 26 months and it took about 6 months to see significant weight gain.

Guest Lucy
Guest Lucy
Posted

My son had NO symptoms. He was diagnosed at 2.5. The only reason he was screened was because his Endocronologist ran it as standered procedure for all type 1 diabetics.

One thing I have found is that some people with celiac also have intestinal yeast. This can act like gluten. For your son, maybe see if you can get him and the rest of your kids on acidophylos. I don't know if I spelled that right. It will clear up a yeast problem, and then you should see improvement on the gluten free diet.

pwalasik Newbie
pwalasik
Posted

My 2nd child, as well as other people who have Celiac Disease, present with constipation versus diarehea. My 1st child had diarehea, so yes the symptoms can be very different from child to child. Good luck, my thought is that all family members should be tested and genetic testing is a good option too.

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      High TTG-IgG and Normal TTG-IgA

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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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