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What Type Of Follow-up Is Needed?

scooper

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scooper Rookie
scooper
Posted

My daughters were diagnosed with Celiac in Jan and March through positive blood tests and a positive intestinal biopsy for my oldest.

Since the diet change, my 13 year old has started her period and grown 3 inches.

My 11 year old has stopped having stomach problems and looks much healthier.

I don't remember the GI specialist giving any directions on returning for further follow-ups. Do you guys suggest doing another blood test - if so after what amount of time? We'll go see our pediatrician soon for a check up, but she seems to look for my lead in terms of the Celiac treatment.

The GI doc originally did a bone scan and checked for diabetes and thyroid problems. Is there any reason to repeat those tests periodically?

Thanks for any suggestions.

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taweavmo3 Enthusiast
taweavmo3
Posted

After my daughter was diagnosed, we followed up with the GI 6 months later for a repeat blood test and weight check. Then we followed up two more times, mainly just to check in, have her weighed, and to answer any questions I may have. It's been 3 years, and he said we can check in once a year now. Our regular pedi has done some additional blood work for thyroid and Hgb since she still gets fatigued easily. But that's really it, I don't really feel the need to check in with the GI unless other symptoms pop up.

bear6954 Apprentice
bear6954
Posted

I was told that 5 years after diagnosis that my son would need to have a bone scan to make sure he does not have osteoperosis (sp?). I asked my dr to do a blood test to check my sons liver fuction.

cruelshoes Enthusiast
cruelshoes
Posted

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How often should follow-uptesting occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.

What tests are needed at follow-up appointments? How are they interpreted?

New guidelines on the diagnosis and treatment of celiac disease by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition state that tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward

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      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
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      TTG IgA reference range 0.0 to 14.9 KU/L
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      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
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      I have had the tTG-IgA blood test my result are >250.0  I am waiting for the appointment with the gastroenterologist for endoscopy and biopsies.    what are the chances it’s not coeliacs.  waiting and not knowing is so hard. Especially the eating of gluten knowing it may be causing you more harm and coping with the symptoms. 
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      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
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