Help For My Cousin

[schuyler]

Since everyone here has been so helpful to me, I thought some of you might be able to help my cousin. She has 3 young boys (4, 3, and 23 months), and I think they all need to be tested for celiac. The child that I am really concerned about is the 3 y/o. Although he has been growing in height, he has actually lost 2 lbs since his 1st b-day. He currently weighs 20-21lbs and is about 40 inches tall. He looks like a malnourished African kid. His arms and legs look like sticks and his belly is swollen. Every bone on his body sticks out. He also eats all the time. Yesterday he had 4 large pancakes, 2 bananas and a large bowl of watermelon for breakfast. 30 minutes later, he was hungry again, so he had a sandwich. Before lunch, he snacked on fruit. For lunch, he had 3 pieces of pizza and more fruit. He had more fruit and sandwiches (about 2) until dinner, where he had 2 quarter lb hamburgers some fruit and cookies. He continued eating like this all day. He seriously eats more that 2 grown men.

He seems to have more stomach problems than normal kids, but he is not in constant pain (he might have 1 stomachache a week). He does not have any diarrhea or constipation problems, but he does have floating, fatty stools.

A few times a night, he wakes up screaming like he is having night terrors. He gets as stiff as a board and just screams. During this time, he is completely unresponsive because he is not awake (although his eyes are open, they are usually rolled back in his head). Each episode usually lasts about 30 minutes.

Her other sons have some behavioral pbs and the youngest does appear to react to some foods. They are both thin (but not frail like the middle son). The 4 y/o is 45 inches and 35-37 lbs and the 23 month old is 32-33 inches and 22 lbs of solid muscle (but he was a 17 ounce preemie). Even though they are thin, they are both muscular and healthy looking (they don't have the protruding bellies). Sometimes the 23 month olds eyes will move back and forth rapidly (like Eamon, the little boy on Mystery Diagnosis). He also has some diarrhea and constipation problems. Since he doesn't speak yet, we don't know if he has any stomach pain. The oldest is almost always angry, but he doesn't know why. I know that celiac can cause behavioral problems. He too has the floating, fatty stools.

The boy's dr said that since the kids don't have constant diarrhea and severe stomach issues, they could not have celiac. I think that all of her kids should be tested asap because her current military insurance will cover all of the testing (as long as a dr says that it is medically necessary) and once she gets out of the military in a few months, she will not be fully covered. Even though I really only think the 3 y/o has celiac (possibly the youngest, but after seeing him recently, I'm not so sure), I think that since they are all covered 100 % and they all have some symptoms, everyone (including my cousin) should be tested and have the gene test.

Sorry this is so long, but my cousin would like some advice on what to do. She will be printing all of the responces and showing them to her dr.

If the dr still refuses to test the kids, she will take them to another dr. Her insurance allows her to see non-military drs and still covers 100%, so she is interested in getting names of good drs and pediatric GI's near the Bay Area in CA, the Modesto area, or Northern CA (Redding area). Any info would be much appreciated. My cousin is at her wits end because drs believe that every celiac child has the same symptoms and refuse to believe that it can have any atypical presentations. She would also like to know if she should try them on a gluten-free diet if she can't find a dr to test them, or if they are tested and it comes back negative (I told her to, but she needs to hear this from more than one person). TIA

Danielle

[angel-jd1]

It sounds like they have grounds to be tested. Each person with celiac disease does not have the same symptoms. Some people are asymptomatic and have NO symptoms. It sounds to me like the little boy has the distended belly, muscle wasting and wasting buttocks. Which are large symptoms for a child. He has a large appetite which is getting him no where (not gaining wt., but instead loosing wt.). Seems that that is a sign of malabsorption to me.

There are over 200 symptoms that a person with celiac disease can have. Just because the "typical" symptoms don't arise does not mean that they are not a canidate for testing. It is critical to test so that children and adults can live healthy normal lives. Please also share the following list with your Doctor, it is a list of SOME of the symptoms of celiac. I hope that this Doctor realizes the importance of testing the kiddoes, it is not going to hurt anything to test them. It will rule out a serious condition, give family and parents piece of mind, and help to figure out what is wrong with the child. Good luck on your journey and keep us updated on your findings.

-Jessica

Most of this was compiled from the aafp.org and celiac.com websites info on celiac symptoms.

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease. list from celiac.com message board

[Hair Detective]

Since everyone here has been so helpful to me, I thought some of you might be able to help my cousin. She has 3 young boys (4, 3, and 23 months), and I think they all need to be tested for celiac. The child that I am really concerned about is the 3 y/o. Although he has been growing in height, he has actually lost 2 lbs since his 1st b-day. He currently weighs 20-21lbs and is about 40 inches tall. He looks like a malnourished African kid. His arms and legs look like sticks and his belly is swollen. Every bone on his body sticks out. He also eats all the time. Yesterday he had 4 large pancakes, 2 bananas and a large bowl of watermelon for breakfast. 30 minutes later, he was hungry again, so he had a sandwich. Before lunch, he snacked on fruit. For lunch, he had 3 pieces of pizza and more fruit. He had more fruit and sandwiches (about 2) until dinner, where he had 2 quarter lb hamburgers some fruit and cookies. He continued eating like this all day. He seriously eats more that 2 grown men.

He seems to have more stomach problems than normal kids, but he is not in constant pain (he might have 1 stomachache a week). He does not have any diarrhea or constipation problems, but he does have floating, fatty stools.

A few times a night, he wakes up screaming like he is having night terrors. He gets as stiff as a board and just screams. During this time, he is completely unresponsive because he is not awake (although his eyes are open, they are usually rolled back in his head). Each episode usually lasts about 30 minutes.

Her other sons have some behavioral pbs and the youngest does appear to react to some foods. They are both thin (but not frail like the middle son). The 4 y/o is 45 inches and 35-37 lbs and the 23 month old is 32-33 inches and 22 lbs of solid muscle (but he was a 17 ounce preemie). Even though they are thin, they are both muscular and healthy looking (they don't have the protruding bellies). Sometimes the 23 month olds eyes will move back and forth rapidly (like Eamon, the little boy on Mystery Diagnosis). He also has some diarrhea and constipation problems. Since he doesn't speak yet, we don't know if he has any stomach pain. The oldest is almost always angry, but he doesn't know why. I know that celiac can cause behavioral problems. He too has the floating, fatty stools.

The boy's dr said that since the kids don't have constant diarrhea and severe stomach issues, they could not have celiac. I think that all of her kids should be tested asap because her current military insurance will cover all of the testing (as long as a dr says that it is medically necessary) and once she gets out of the military in a few months, she will not be fully covered. Even though I really only think the 3 y/o has celiac (possibly the youngest, but after seeing him recently, I'm not so sure), I think that since they are all covered 100 % and they all have some symptoms, everyone (including my cousin) should be tested and have the gene test.

Sorry this is so long, but my cousin would like some advice on what to do. She will be printing all of the responces and showing them to her dr.

If the dr still refuses to test the kids, she will take them to another dr. Her insurance allows her to see non-military drs and still covers 100%, so she is interested in getting names of good drs and pediatric GI's near the Bay Area in CA, the Modesto area, or Northern CA (Redding area). Any info would be much appreciated. My cousin is at her wits end because drs believe that every celiac child has the same symptoms and refuse to believe that it can have any atypical presentations. She would also like to know if she should try them on a gluten-free diet if she can't find a dr to test them, or if they are tested and it comes back negative (I told her to, but she needs to hear this from more than one person). TIA

Danielle

Danielle

[Hair Detective]

I'd suggest Dr. Kenneth Fine's stool test for your cousin's children. This test showed gluten sensitivity and t-transglutaminase autoimmune response in my daughter who has alopecia. The problem from my perspective is that waiting to be diagnosed with celiac disease negates the opportunity to take action BEFORE there's villa damage. You can order the stool tests online and submit the tests to your insurance provider directly.

Open Original Shared Link

Love to hear the results if she goes down this path. And from my Newsletter, Inside Out....

Testing for Gluten Sensitivity and Celiac

When it was discovered in the 1940s that gluten was the cause of celiac disease, the best diagnostic test was to remove gluten from the diet and see if you got better. Then in 1950 a biopsy to detect damage to the villi in the intestine was developed and became the “gold standard”. In the 1970s, 80s and 90’s, new blood tests were developed to detect antibodies in the blood (IgG, IgA, t-transglutaminase) allowing doctors to diagnose individuals with celiac without an invasive biopsy.

But the blood tests had a problem. A positive blood test indicated that you had celiac, but a negative test result didn’t necessarily mean you were o.k. In fact, the two blood tests commonly used to make a diagnosis are only accurate 59% of the time and, in the early stage of celiac disease, before damage to the intestine occurs, the tests only detect celiac 31% of the time. In the late 1990s, Dr. Kenneth Fine developed a stool test. The test has a higher accuracy for detecting celiac and gluten sensitivity, in addition to showing that celiac is just the tip of the iceberg of gluten induced diseases.

[schuyler]

Thanks for the advice so far. I am going to give the info to my cousin when I see her next Friday.

[mouse]

If she decides to go the route of the Celiac tests thru the doctor, she needs to INSIST that the full panel of five tests gets done. I can't remember what they are called, but I am sure that someone will post it.

[schuyler]

If she decides to go the route of the Celiac tests thru the doctor, she needs to INSIST that the full panel of five tests gets done. I can't remember what they are called, but I am sure that someone will post it.

I will