Constantly hungry and has tummy ache most of the day? Very concerned- any thoughts?

[celticmom]

Another thing to consider would be Marfan Syndrome especially if he has extremely flexible joints. That would be fairly serious but much easier to manage if it is diagnosed at a young age.

[Tammy (TX)]

Thank you, but I wonder if since everybody all came to the same conclusion so fast if I should have caught this before :001_huh: I am not feeling like a very good mommy at the moment

 

Don't feel bad! The only reason I know about it is because of my own health problems - and mainstream doctors that didn't know what was going on. My chiropractor figured it out for me! People are really just starting to realize how widespread this is - if it does turn out to be gluten intolerance or celiac.

 

So should I do a trial gluten free diet? Somebody said to not if I am going to get him tested, but what would be best? Immediately trying a diet change or getting tests ran first?

 

This is a hard decision, but base it on your own situation. If you have a knowledgable doctor that will take you seriously (appropriate testing in the next week or so) then he could stop eating the gluten (and dairy) right away. There will still be enough in his system to flag the antibodies in the test.

 

It just depends if you want the "diagnosis" by labwork or by the way he feels. If he goes off of gluten and feels great, some doctors still won't accept that for a diagnosis and will ask him to start eating it again to run their tests - no matter how bad it makes him feel!!

 

Misty has a lot of of good information about the tests. If your son does get a celiac panel and it comes back negative, I would still think about doing some of the other tests she listed.

 

Hoping for a great doctor visit and lots of questions answered! I know it's overwhelming.

[Lacie]

My son used to want to drink all the time. And he complained of a tummy ache especially after eating.

 

He was diagnosed with stomach ulcers and reflux. With a little bit of medicine and an altered diet (low acid) he is feeling better.

 

Keep us posted about your little one. I hope you figure things out soon.

[Julie in CA]

No :glare: The only doc I really like and trust lives 1,800 miles away :crying: (we moved away from our home area just under 4 years ago) I am gonna see if I can get him in somewhere else sooner

I'm sorry, that just really stinks! :grouphug:

I would do as you plan, and see if you can get him in somewhere else. If this is not a great situation to begin with, you might be better off anyway.

[gsesce]

I'm so sorry you're going through this! I have to second the nurse and others who are urging you not to wait a week to see a doctor for this. It sounds like diabetes is a real possibility.

 

Symptoms for Type 1 Diabetes in Children:

Increased thirst and frequent urination. As excess sugar builds up in your child's bloodstream, fluid is pulled from the tissues. This may leave your child thirsty. As a result, your child may drink — and urinate — more than usual.

Extreme hunger. Without enough insulin to move sugar into your child's cells, your child's muscles and organs become energy depleted. This triggers intense hunger.

Weight loss. Despite eating more than usual to relieve hunger, your child may lose weight — sometimes rapidly. Without the energy sugar supplies, muscle tissues and fat stores simply shrink. Unexplained weight loss is often the first sign to be noticed.

Fatigue. If your child's cells are deprived of sugar, he or she may become tired and lethargic.

Irritability or unusual behavior. Children with undiagnosed type 1 diabetes may suddenly seem moody or irritable.

Blurred vision. If your child's blood sugar is too high, fluid may be pulled from the lenses of your child's eyes. This may affect your child's ability to focus clearly.

 

Good luck, I hope it turns out to be nothing serious.

[Isabella]

So should I do a trial gluten free diet? Somebody said to not if I am going to get him tested, but what would be best? Immediately trying a diet change or getting tests ran first?

 

Just be aware that sometimes it takes a looong time for the gut to heal, and for improvements to show. Don't be disheartened and give up.

 

My friend said that she didn't start feeling very well till after about 18months of going completely GFCF.

[Misty]

My testing recommendations:

 

IgE RAST or blood draw with any allergy clinic (ask your pedi)

 

Celiac panel with your pediatrician (will likely be negative though)

 

IgG food allergy panel with Great Plains Labs http://www.greatplainslaboratory.com (this will catch non-celiac gluten intolerance)

 

Gluten sensitivity stool test with Enterolab http://www.enterolab.com/ (another way to catch ANY type of gluten sensitivity)

 

One of the above will catch gluten sensitivity if he has it.

 

All require being on gluten at the time of testing EXCEPT the IgE.. BUT he likely does not have any IgE (immediate, anaphylactic-type) allergies.. This is a "just in case" test.

 

I just want to clarify that he should have ALL of the above testing done IF YOU CAN. If you have to skip one, I would skip either the stool test or the IgG, but definitely get one or the other. There are so many varying degrees of gluten sensitivity and celiac. You sometimes can't diagnose it with just one test. You have to go at it from different angles sometimes before you can get a diagnosis. If it seems overwhelming to you, then just skip the testing and put him on a GF diet. Since he is still young, it should take only a couple of months for him to feel better. Gluten won't leave his system completely for at least 6 months and his gut won't be completely healed from the damage for at least a year (older adults take up to 2 years to heal). But it's all so very worth it. If he is gluten sensitive, and he continues to eat gluten, that would be like ignoring diabetes and letting him eat whatever. It's very dangerous so it's important to get this ruled out (or in) ASAP. Good luck and please PM me if you have any questions.

[Misty]

It sounds like diabetes is a real possibility.

 

yes, I agree diabetes could be an issue here.. Diabetes is also associated with gluten intolerance and celiac disease. Celiac is what fuels most autoimmune disorders. So if he has diabetes, he most likely will need to go GF anyway. Many doctors are starting to test children for gluten sensitivity if they are thin and are diagnosed with diabetes.

[texasmama]

I just want to clarify that he should have ALL of the above testing done IF YOU CAN. If you have to skip one, I would skip either the stool test or the IgG, but definitely get one or the other. There are so many varying degrees of gluten sensitivity and celiac. You sometimes can't diagnose it with just one test. You have to go at it from different angles sometimes before you can get a diagnosis. If it seems overwhelming to you, then just skip the testing and put him on a GF diet. Since he is still young, it should take only a couple of months for him to feel better. Gluten won't leave his system completely for at least 6 months and his gut won't be completely healed from the damage for at least a year (older adults take up to 2 years to heal). But it's all so very worth it. If he is gluten sensitive, and he continues to eat gluten, that would be like ignoring diabetes and letting him eat whatever. It's very dangerous so it's important to get this ruled out (or in) ASAP. Good luck and please PM me if you have any questions.

 

The Enterolab stool test does not require that the person be eating gluten prior to the testing. It has proven very accurate for my family. Blood testing for celiac in children is not terribly accurate. There are many false negatives. IMO, the true test is how a person functions and feels when not eating gluten. If a positive change occurs, that is really the only "test" you need in order to make the changes. There are reasons for pursuing an official medical diagnosis and there are reasons for not doing so.

[Misty]

I don't know. I guess it was an assumption based on his eating. I read the article- wow :001_huh:

 

Did you watch the news report that I linked in my post (post #45)? I added it in afterward so you might have missed it.

 

Here it is again just in case.. http://www.youtube.com/watch?v=-Ns_0jIsLsw

[Misty]

The Enterolab stool test does not require that the person be eating gluten prior to the testing. It has proven very accurate for my family. Blood testing for celiac in children is not terribly accurate. There are many false negatives. IMO, the true test is how a person functions and feels when not eating gluten. If a positive change occurs, that is really the only "test" you need in order to make the changes. There are reasons for pursuing an official medical diagnosis and there are reasons for not doing so.

 

I totally agree! I was just giving her the testing info just in case she wanted to pursue testing.. But I totally agree that an elimination diet is the gold standard.

[klmama]

I would call the doctor in the morning and talk to the nurse again regarding the amount of liquid he consumes. They may want to see him right away to rule out diabetes, even if you do have to wait a week to complete a food diary.

 

His tummy aches might be related to all of the milk he consumes. Sometimes people are drawn to foods they are actually allergic to or which they don't tolerate. I would also be concerned about the gluten. Many are intolerant, even if they test negative for celiac.

 

:grouphug: I hope you figure this all out soon!

[ChrisB]

:001_huh: When he was 3 months old he was so congested since birth they thought he had that. (I am talking his o2 stats were between 88-91 congested)

I have one DD who was fairly congested, although not as much as your DS, from birth. 3 or 4 weeks after she was born, I decided to take dairy completely out of my diet (I was BFing) and it cleared up within a few days. All this to say that your DS might be intolerant of dairy too.

 

ETA: I have another DD who has eczema and it is partially due to dairy. FWIW

Edited August 19, 2011 by ChrisB

[Mrs Mungo]

Quick thoughts- that's a lot of carbs. If I feed my kids carb heavy meals they are hungry soon after and then eat more.

 

Maybe try tweaking what you feed before being more concerned?

 

I tend to agree with this. This morning my kids ate a bowl of cereal while I made breakfast. They ate eggs (some of them had cheese), sausage, half of an avocado and raspberries. They seem to feel full longer when they have plenty of protein and fat. I don't disagree with testing, but I would try adjusting his current diet before doing an elimination diet.

[4wildberrys]

Ok so here are the signs/symptoms of Celiacs and I put in red if it applies to him or not.

 

Gastrointestinal symptoms include:

 

 

• Abdominal pain, bloating, gas, or indigestion YES

   

• Constipation

• Decreased appetite (may also be increased or unchanged) HUGE APPETITE

   

• Diarrhea, either constant or off and on I HAVEN'T NOTICED THIS BUT I AM NOT SURE

   

• Lactose intolerance (common when the person is diagnosed, usually goes away after treatment) NO, HE LOVES DAIRY

   

• Nausea and vomiting NO, JUST TUMMY ACHES

• Stools that float, are foul smelling, bloody, or “fatty†I DON'T KNOW

   

• Unexplained weight loss (although people can be overweight or of normal weight) NOT REALLY LOST, JUST SUPER THIN

   

 

Because the intestines do not absorb many important vitamins, minerals, and other parts of food, the following symptoms may start over time:

 

 

• Bruising easily NO

   

• Depression or anxiety NO

   

• [/url]Fatigue YES, BUT I ASSUMED THAT WAS FROM THE LOW TONE

   

• Growth delay in children NO, HE IS VERY TALL FOR HIS AGE

   

• Hair loss NO, BUT IT GROWS VERY SLOW AFTER A CUT/SHAVE

   

• Itchy skin (dermatitis herpetiformis) HE WAS DIAGNOSED WITH ECZEMA

   

• Missed menstrual periods UMMMM NO ;)

   

• Mouth ulcers NO

   

• Muscle cramps and joint pain HE SAYS HIS LEGS HURT QUITE OFTEN :001_huh:

   

• Nosebleeds YES!!!!!!!!!!! ALWAYS, ALL MY KIDS BUT 1 DOES

   

• Seizures HE HAS HAD 3 :001_huh:

   

• Tingling or numbness in the hands or feet NOT THAT I KNOW OF

   

• Unexplained short height NO

   

 

Children with celiac disease may have:

 

 

• Defects in the tooth enamel and changes in tooth color NO

   

• Delayed puberty TO YOUNG

   

• Diarrhea, constipation, fatty or foul-smelling stools, nausea, or vomiting NO NAUSEA OR VOMITING, NOT SURE ABOUT THE STOOLS

   

• Irritable and fussy behavior NO

   

• Poor weight gain YES!!!!!!!!!!!!!!

   

• Slowed growth and shorter than normal height for their age NO, JUST THE OPPOSITE

   

 

 

You have enough 'Yes' answers to definitely warrant a testing for Celiac. The funny thing with Celiac is that any of these symptoms can show up, but not all. Or some symptoms can be the opposite of what is 'normal' for Celiac. Before our diagnosis, I was the one with an AMAZING appetite. I could put away more food than a grown man and it never showed :tongue_smilie: My kids were never small, just the opposite. They never were emaciated with diarrhea---the old school 'warning symptoms'. Now pretty much any anomaly in health or metabolism can warrant a testing.

[texasmama]

I totally agree! I was just giving her the testing info just in case she wanted to pursue testing.. But I totally agree that an elimination diet is the gold standard.

 

You and I are in agreement. Just wanted to clarify that the Enterolab testing doesn't require that one be eating gluten at the time of the test.:001_smile:

[4wildberrys]

You and I are in agreement. Just wanted to clarify that the Enterolab testing doesn't require that one be eating gluten at the time of the test.:001_smile:

 

Really---not anymore? I know they have improved their testing accuracy since we used Enterolab in 2005. Wouldn't the person still have to have eaten gluten shortly before the test though?

 

And I HIGHLY recommend Enterolab. They are spot on accurate----for us and for everyone else that we know who has used them. ;)

[texasmama]

You have enough 'Yes' answers to definitely warrant a testing for Celiac. The funny thing with Celiac is that any of these symptoms can show up, but not all. Or some symptoms can be the opposite of what is 'normal' for Celiac. Before our diagnosis, I was the one with an AMAZING appetite. I could put away more food than a grown man and it never showed :tongue_smilie: My kids were never small, just the opposite. They never were emaciated with diarrhea---the old school 'warning symptoms'. Now pretty much any anomaly in health or metabolism can warrant a testing.

 

I agree, as this has been my experience. Some of the symptoms on that list are caused by long term vitamin/mineral depletion/malabsorption, which might not show up in a young child.

 

My youngest dd has suspected celiac and has been gf for three years. She was horribly constipated (requiring Miralax and suppositories to have a bowel movement) and had constant reflux. However, she was a big, healthy toddler when we removed gluten. Her reflux and constipation immediately went away. I attempted a gluten challenge (lasted 24 hours because the symptoms were so immediate and obvious), and within an hour of eating gluten, she had obvious gastric reflux. She consumed a medium sized bag of goldfish crackers over a 24 hour period and did not have a bowel movement for three days. (This is a child who is a 1-3 times a day pooper.) I always believed that celiac meant diarrhea, but my dd's symptom was contipation.

[Wyndie]

I have not read the rest of the replies. My son used to be like this. First we pulled gluten (and honestly, did a whole lot of other dietary changes but gluten was a biggie) and the tummy aches went away. But he was still super skinny in spite of being able to eat 2x as much as my DH in any given meal. It was parasites... we finally got a test to show it after quite some time (it took 2 years to get it to show but we just knew that had to be it). It was klebsiella pneumonia if I remember correctly. This parasite is notorious for eating the nutrients and leaving the host with nothing. After treating him for this parasite, he gained 10 lbs in a very short period of time. His appetite became less voracious too. He is still skinny but he no longer looks like a starvation victim and his appetite is normal for his age/gender. ;)

[texasmama]

Really---not anymore? I know they have improved their testing accuracy since we used Enterolab in 2005. Wouldn't the person still have to have eaten gluten shortly before the test though?

 

And I HIGHLY recommend Enterolab. They are spot on accurate----for us and for everyone else that we know who has used them. ;)

 

When we had our testing in 2007, it was not necessary to be eating gluten at the time of the testing. Perhaps they have changed their procedures. Enterolab nailed our family, as well.

[wy_kid_wrangler04]

Did you watch the news report that I linked in my post (post #45)? I added it in afterward so you might have missed it.

 

Here it is again just in case.. http://www.youtube.com/watch?v=-Ns_0jIsLsw

 

 

 

I did miss this :001_huh:

[vettechmomof2]

yes, I agree diabetes could be an issue here.. Diabetes is also associated with gluten intolerance and celiac disease. Celiac is what fuels most autoimmune disorders. So if he has diabetes, he most likely will need to go GF anyway. Many doctors are starting to test children for gluten sensitivity if they are thin and are diagnosed with diabetes.

 

Type 1 diabetes is a autoimmune disease as well as Celiac disease. Autoimmune diseases are very common that if you get one you might get another however just because someone develops Type 1 does not mean they would need to go gf.

My daughter has had Type 1 for almost 5 years now and has not developed any other autoimmune diseases. However it does not mean that she won't either. Almost all children who have Type 1 diabetes are thin because their body is starving itself. Once they get the proper amount of insulin in their bodies again they can actually start to gain weight again.

 

With all that being said, it would not hurt to take your son and get some testing done at least to rule out your concerns.

My son is 6.5 and both of my children have always eaten a HUGE amount of food. My son weighs 42 lbs and eats just about every 2-4 hours. We eat a high protein diet. Lots of meat,eggs and salads at almost every meal. The diary of food that you gave is very high in carbs, and I would first just cut out the high amount of milk and have him drinking only water to see what happens then.

My children only get milk on occassion, but love it. However if I let him drink that much he would have a belly ache as well(it has happened at grandma's).

Good luck and def. keep a detailed food diary since your doc wants that but it will help you as well.

[melmichigan]

To take a child who is very thin with parental concern over constant hunger, abdominal pain (even assumed to be hunger), what could easily classify as excessive thirst, and tell them to keep a food log for a week without performing even the simplest screening is a serious neglect of symptoms, IMHO.

[wy_kid_wrangler04]

To take a child who is very thin with parental concern over constant hunger, abdominal pain (even assumed to be hunger), what could easily classify as excessive thirst, and tell them to keep a food log for a week without performing even the simplest screening is a serious neglect of symptoms, IMHO.

 

 

 

Apparently a week is good. Another doc 45mins away said the quickest they can get him in is Sept 16 :glare: Those are the docs we usually go to.

[lisamarie]

Just another reason why I love this board. I started researching celiac rashes after some of the comments on here and found this picture. http://www.herpetiformisdermatitis.com/

 

I have this! I was on vacation and went tubing and thought the stripes on my shoulder were some parasite or strange bug bite. It itched like crazy. It's been 7 weeks now and while it has gotten much better, the biggest stripe is still there.

 

I also have had rashes on my fingers for years that come and go which did clear up the one time a few years ago I tried going gluten free.

 

My guess on the stripe rashes is that my vacation also coincided with my starting a new diet and my eating a lot more wheat than before. I used to only eat wheat once a day at the most vs now where I eat it 4-5 times a day.

[Wyndie]

Just another reason why I love this board. I started researching celiac rashes after some of the comments on here and found this picture. http://www.herpetiformisdermatitis.com/

 

I have this! I was on vacation and went tubing and thought the stripes on my shoulder were some parasite or strange bug bite. It itched like crazy. It's been 7 weeks now and while it has gotten much better, the biggest stripe is still there.

 

I also have had rashes on my fingers for years that come and go which did clear up the one time a few years ago I tried going gluten free.

 

My guess on the stripe rashes is that my vacation also coincided with my starting a new diet and my eating a lot more wheat than before. I used to only eat wheat once a day at the most vs now where I eat it 4-5 times a day.

 

Lisa,

 

I have a young friend (6) who has this. Her mom keeps her on a strict gf diet and she is symptom free. :)

[Misty]

Just another reason why I love this board. I started researching celiac rashes after some of the comments on here and found this picture. http://www.herpetiformisdermatitis.com/

 

I have this! I was on vacation and went tubing and thought the stripes on my shoulder were some parasite or strange bug bite. It itched like crazy. It's been 7 weeks now and while it has gotten much better, the biggest stripe is still there.

 

I also have had rashes on my fingers for years that come and go which did clear up the one time a few years ago I tried going gluten free.

 

My guess on the stripe rashes is that my vacation also coincided with my starting a new diet and my eating a lot more wheat than before. I used to only eat wheat once a day at the most vs now where I eat it 4-5 times a day.

 

I get rashes on my fingers on my right hand if I eat gluten. It breaks out within 30 minutes of ingestion. And I can tell how much gluten I ate by how badly my fingers break out. Cross contamination gives me just a few little bumps.. But if I eat something major, the entire side of my hand (inside of thumb, index finger, and middle finger) will itch, crack open, bleed, etc. The joints in those same fingers also will hurt. This happened last Thanksgiving, but I still have no idea what I ate.. My best guess is either my sister-in-law put flour in her mashed potatoes OR it was the glaze on the ham. We are having an ALL gluten-free Thanksgiving this year, which will be easy since almost everyone in my family is now gluten free.

 

It makes me angry that I had this rash for 12 years straight and the doctors couldn't put 2 and 2 together for me.. I was underweight and had skin issues.. Now when I tell doctors that I have celiac, they say "Oh that must be why you are so thin".. :glare:

 

My mother has DH and she is really having a hard time getting rid of it. She only went GF earlier this year and she wasn't perfect with it for the first few months. Plus she gets cross contamination from my step-dad's food. She is finally to the point where she is not getting any new ones, but the old ones are taking forever to heal up. DH is difficult to get rid of. Seems to take forever.. So if it seems that way for you, don't give up on the diet.. Just be patient and stay diligent. You must be 100% GF at all times to get rid of it.

Edited August 20, 2011 by Misty

[Terabith]

Do you know anyone who is diabetic who could check his blood sugar?

[TracyR]

Just an FYI , no most people walk around and not have a clue they have intestinal parasites. Its said that some 80% of the US population is walking around with some type of parasite and they don't have a clue.

The tough part is that these days most of the testing out there rarely picks up on the fact that people have them. Albeit it worm, virus , bacteria parasites.

The only real way of diagnosing Celiac is to take him off of gluten. I've read in many cases where the testing doesn't always pick that up either. Its kind of like allergies. Allergy testing doesn't pick up all allergies either. Most times you have to eliminate foods in order to find the allergy.

[wy_kid_wrangler04]

Do you know anyone who is diabetic who could check his blood sugar?

 

 

Not locally. We moved to a very small rural area. If we still lived in Michigan I would know abunch of people who lived close :confused:

[elfgivas]

:grouphug:

 

crohn's and ulcerative colitis can present this way, too.... checking the stool will help eliminate that option or give you cause to investigate further.

 

for most of what it might be, a few days to gather info is okay. the exception to that that i know of is type 1 diabetes. (there may be others) if you are concerned about that, you could ask the doctor for a "nurse appointment" tomorrow to check to see if he's spilling ketones and to do a blood test. then the doctor will have the results when he sees you. usually, nurses appointments are much easier and faster to get, or if they can't manage that, you could ask them to write the order and email it to whatever lab they use and you could go there to get the test done. that way, it takes almost none of their time, and gets the ball rolling.

 

hth,

ann

[zaichiki]

Just an FYI , no most people walk around and not have a clue they have intestinal parasites. Its said that some 80% of the US population is walking around with some type of parasite and they don't have a clue.

 

Wha?! Seriously?! Who says this?

[Misty]

Type 1 diabetes is a autoimmune disease as well as Celiac disease. Autoimmune diseases are very common that if you get one you might get another however just because someone develops Type 1 does not mean they would need to go gf.

 

I consider Celiac to be the mother of all autoimmune diseases though. If you have Celiac, more autoimmune diseases are going to be triggered. Gluten is responsible for more than we realize.

[Misty]

:grouphug:

 

crohn's and ulcerative colitis can present this way, too.... checking the stool will help eliminate that option or give you cause to investigate further.

 

Both of these are associated with gluten also.. Google it to learn more.

[ElizaG]

I consider Celiac to be the mother of all autoimmune diseases though. If you have Celiac, more autoimmune diseases are going to be triggered. Gluten is responsible for more than we realize.

But not everything, unfortunately. I've been off gluten for more than 1/3 of my life and still have a bunch of strange symptoms. This might be due to long-term damage, but that doesn't explain why some of my children also have "issues" (digestive and otherwise) that showed up long before they were exposed to gluten. It seems likely to me that celiac is part of a bigger picture -- perhaps some sort of chronic infection or metabolic disorder -- rather than the underlying cause of all the problems.

 

Still, I definitely agree that it's something the OP should look into ASAP. Whatever the reason, gluten disagrees with a lot of people. :tongue_smilie: