My 9 year old son

[Deb643]

I don't what to do anymore?  My son has had 4 or 5 endoscopies.  He has ulcers in his esophagus and has for about 5 years, no food allergies, no celiac, and all kinds of medication non seem to work ulcers are still there everytime he has a endoscopy. He get sores on his toug so I know he is having problems. He has anxieties problems and I'm starting to wonder if there could be any relation.  The Docter says it is acid reflux a special diet and medication have not taken care of these ulcers.  Please help I'm afraid one of these days he will get a hole in his esophagus.

[CalGal]

If both you and your mother have celiac, there's a very good possibility that you son does also. I, personally, feel that both the blood test and the biopsy leave a lot to be desired when it come to actually detecting celiac problems. There have been studies done in which those tests were done - coming up negative - and it wasn't until a duodenal aspirate was done and checked for antibodies that celiac showed up. You may want to take a look at fecal antibody testing for celiac and the related genetic testing that can be done. Check out www.enterolab.com.

Dr. Fine worked with an Italian group some years ago and developed a fecal antibody test for celiac/gluten intolerance. It was based on studies of some with IBS. They found about 25% of those with IBS didn't have IBS at all. Instead, they had silent celiac. They only seemed to show celiac antibodies in the GI tract, not systemically. But they did have the genetic markers and they were suffering.

We finally tracked down my husband's problem using the fecal antibody test.

The problem with the biopsy is that someone who is suffering with celiac may not 'pop' positive in the biopsy. No one knows why, but it happens. And when the IELs (intraepithelial lymphycytes) are counted, they may fall below a pre-set limit (which is 40 in many labs). So if 'normal' is 20, and a person comes up with IELs at 30, they're deemed negative.

If he doesn't have celiac within a few months you'll have an answer if you change his diet. After all he's been through, a few months seems like a very short time to try to change things around.

[Deb643]

Yes I've gotton all 5 copies of his biopsy which shows Gerd and food allergy on the first two and just Gerd on the others. We where told he has erosive esophags and after 5 years he is to stay on medicine that dosn't work I did take him of the medicine and to see what happened and put he on this special juice I get, While he finally gained 11 pounds in almost 1 year which is great but the last biopsy stilled showned a ulcer in the esophagus.  I believe the juice is working because of the weight gain but there is still ulcers there.  Now the Doctor wants me to bring him back in for another biopsy which leaves scare tissue each time.  I'm about ready to go the holistic route with the juice instead of putting he back on medicine that doesn't work or even tested on a child his age for long point of time.   I and my mother both have celiac and he has been tested everytime he has had a endoscopy done, each time negitive.  I have thought of putting him on a gluten free diet but we have taken so many other foods away it seems unfear if he doesn't have celiac.  Not to add to the fact if he was tested again he would test negitive if he is gluten free.

[CalGal]

Deb, do you have the written reports and the biopsy reports from the endoscopies? Have you read through them? I'd be very curious to see what the wording is on those reports. I know you trust your docs, but sometimes it's necessary to go through the reports yourself, and I'd suggest that you do so. Something more than just 'acid reflux' is going on.

Is there any history of any form of GI issues in your family? Any celiac? I know you said he's been tested, but the blood tests are not that accurate. Has he also been tested for Crohn's disease via antibody testing?

Is he having any other symtoms that you didn't mention?

[ChitChatNine]

Do let me know what they say ........ if anything, maybe temporary relief ....  Have a great weekend!

Cheryl

[Deb643]

Thank you, I while call the Doctor on Monday and seen what he thinks.

Debbie

[ChitChatNine]

Here is info I copied from online info about Carafate:

Prescription Drugs
Brand name:
Carafate
Generic name: Sucralfate


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Why is Carafate prescribed?
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Carafate Tablets and Suspension are used for the short-term treatment (up to 8 weeks) of an active duodenal ulcer; Carafate Tablets are also used for longer-term therapy at a reduced dosage after a duodenal ulcer has healed.

Carafate helps ulcers heal by forming a protective coating over them.

Some doctors also prescribe Carafate for ulcers in the mouth and esophagus that develop during cancer therapy, for digestive tract irritation caused by drugs, for long-term treatment of stomach ulcers, and to relieve pain following tonsil removal.


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Most important fact about Carafate
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A duodenal ulcer is a recurring illness. While Carafate can cure an acute ulcer, it cannot prevent other ulcers from developing or lessen their severity.


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How should you take Carafate?
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Carafate works best when taken on an empty stomach. If you take an antacid to relieve pain, avoid doing it within one-half hour before or after you take Carafate. Always take Carafate exactly as prescribed.

If you miss a dose...
Take it as soon as you remember. If it is almost time for your next dose, skip the one you missed and go back to your regular schedule. Never take 2 doses at the same time.
Storage instructions...
Store at room temperature. Protect the suspension from freezing.

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What side effects may occur?
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Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Carafate.

Side effects may include:
Constipation

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Why should Carafate not be prescribed?
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There are no restrictions on the use of this drug.


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Special warnings about Carafate
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If you have kidney failure or are on dialysis, the doctor will be cautious about prescribing this drug. Use of Carafate while taking aluminum-containing antacids may increase the possibility of aluminum poisoning in those with kidney failure.


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Possible food and drug interactions when taking Carafate
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If Carafate is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Carafate with the following:

Antacids

Blood-thinning drugs such as warfarin sodium

Cimetidine

Digoxin

Drugs for controlling spasms

Ketoconazole

Levothyroxine

Phenytoin

Quinidine

Quinolone antibiotics such as ciprofloxacin hydrochloride and ofloxacin

Ranitidine

Tetracycline

Theophylline


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Special information if you are pregnant or breastfeeding
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The effects of Carafate during pregnancy have not been adequately studied. If you are pregnant or plan to become pregnant, inform your doctor immediately. Carafate may appear in breast milk and could affect a nursing infant. If this medication is essential to your health, your doctor may advise you to discontinue breastfeeding until your treatment with this medication is finished.


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Recommended dosage for Carafate
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ADULTS


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Active Duodenal Ulcer:

The usual dose is 1 gram (1 tablet or 2 teaspoonfuls of suspension) 4 times a day on an empty stomach. Although your ulcer may heal during the first 2 weeks of therapy, Carafate should be continued for 4 to 8 weeks.

Maintenance Therapy:

The usual dose is 1 gram (1 tablet) 2 times a day.

CHILDREN


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The safety and effectiveness of Carafate in children have not been established.


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Overdosage
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Although the risk of overdose with Carafate is low, any medication taken in excess can have serious consequences. If you suspect an overdose, seek medical attention immediately.

Symptoms of overdose may include:
Abdominal pain, indigestion, nausea

[ChitChatNine]

Yes, definitely.  They oftentimes don't like to use it bcz it can mask the pain, etc. as they follow it but infants are prescribed it for acute esophagitis from GERD when young as I have seen many times on message boards for reflux.  C~

[Deb643]

Is this something I need to a prescribtion for?  I'm really to try anything at this point.  


Thank You

[ChitChatNine]

Carafate is liquid or pill form that "coats" the open ulcerations and helps to heal them and protect them from irritants .. it is primary used for ulcers in the stomach but my Ped has scripted it when my daughter had bad canker sores in her esophagus from a virus.  

It is a chalky type of substance.  Something certainly worth asking about????

C~

[Deb643]

Cheryl thank you for your response.  What is Carafate?  And yes Devin has had 3 allergy testing in the last 5 years through needle poks in the back the first one showed multiable food allergy's which we removed from his diet he still showned the uclers.  The 2nd and 3rd allergy test showed no food allergy's those where done about 1year apart from each other.  I have celiac which he has been checked for all the times he had a endoscopy done.  I wish the problem was celiac because I have food allergy and effects my imm system.  

Thanks Debbie

[ChitChatNine]

That must hurt!  Ouch ... my thoughts are with you for this painful condition.  No joint problems or arthritis of any kind right?  i only ask that bcz there are things the rheumatologists look for when there are ulcerations involved in the GI tract/mouth, etc. but I don't know what .. I just know my dd's rheumy always would ask her about mouth sores, etc.

I assume they've tried Carafate?

Have you tried a total food elimination diet under the guidance of an allergist?  Sometimes there are severe intolerances that manifest in this way along the GI tract along the same way as recurring ear infections, sinusitis, etc., etc.  I'm not a Dr. but my kids have had significant GI issues and this may be worthwhile to try and reintro foods slowly and see if the ulcers get better in the interim and/or stop forming unless something new is introduced?   My daughter was on total elim. diet of rice/water/lamb for 5 days .. the allergist was on cover of Time Mag for his research in allergies/asthma and he predicted something small was causing her joint pain and stomach issues/reflux and migraine headaches and he was right!!!!  the schools had just intro'd CHOCO milk at lunch and it was the tyramine in the choco milk causing her all these issues and also sulfites and nitrates.

I cannot eat some nuts and pineapple bcz I get open sores on my tongue within mins to a few hrs later after eating them and the Crystal Light type of drinks do the same thing, too so maybe it is a food doing this to him?  Again, I'm not a doc, but these are my thougths as I read your post and feel for your son.

I cannot see stress doing this unless reflux is caused by stress and eroding the esoph. like this ?  But you didn't mention reflux. ?

Cheryl