Could This Be Celiac?

[ampmomof3]

Hello, I'm not sure where to begin but I'll try...

This is about my 10 year old son (he is a twin born at 32 weeks and had "eczema" untill 2/3 years old). He had his tonsils and adenoids out when he turned five because they were enlarged due to reaccurring ear/sinusitis infections. Soon after surgery and right after starting school he contracted a MRSA infection on his finger that was cleared with draining and antibiotics then, (about 3 months or so) he developed a dry patch on his scalp. I just treated it with dandruff shampoo for several months but it was not clearing it up. Then I noticed it was sticking to his scalp (almost like it "oozed" over night?). We saw a dermatologist and was told seborrea dermatitis. He was sent home with a RX shampoo Nizoral. We used the shampoo as prescribed and there was no change in his scalp. Since we were told that there was no cure for SD, we just continued to hope the shampoo would help soon..

Then when he was about 7 years old he develped a rash behind one ear (he still had the patch of SD on his scalp). The rash was red, scaly and also seemed to "ooze" at night. He never complained about it but I did often catch him scratching at it and his scalp. We saw the dermatologist and was again told SD. This time he was given a steriod RX and another RX for Nizoral shampoo. Neither one helped but the steriod did keep the ear rash under control.

October 2011(9 years old) we started following the Feingold Program Diet. This diet takes out all artificial preservatives, dyes, and artifical flavorings which can all cause attention problems, hyperactivity, etc. (no add DX). They send you a guide book of approved foods/brands to follow....a shopping guide. Anyways, around 11/11 my son's symptoms were increasing....rash spreading(both ears, inside ears, neck, scalp, belly button, penis) he constantly was scratching his butt, sneezing alot, complaining of headaches more often, white lines on all of his fingernails, and started to complain about tummy aches. I had been reading about allergies and rashes...and celiac symptoms, also Dermatitis Herpetiformis. We went gluten free for 10 days.I took him to his pediatrician and requested to have an allergy test (blood test ige) zinc level serum, and celiac blood test (ttg iga and total iga serum).....yeah, the doctors thought I was a nut..but he ordered them anyhow The allergy test came back with low positives for wheat, corn, tomatoes, apples, oranges, tree and grass pollen and mold. The zinc was normal, and ttg iga was 2 (with a positive range of 3 and up) so it was also negative (now, I'm not sure if the 10 days of gluten-free affected the test). He was also tested for pinworms....thankfully that was negative!

1/12 We finally got in to see an allergist. The allergist did a skin prick test that resulted in the same positives except wheat, oranges, and apples. He then did a 48 hour patch test for wheat that was positive. The allergist told me that it was very unlikely that any of these positives were causing the rashes and my son could continue to eat them?? So, I decided to try gluten-free again. I made the whole house gluten-free and in 2 weeks his rash that started at age 5 was GONE!! He still had the other symptoms but no rash! We continued the gluten-free diet for 3 months with no signs of the rash returning.

In July 2012 at my youngest son's birthday party we had hotdogs with regular buns....so I thought it would be a good time to test gluten back in. Well, 5 days later my son's rash was coming back (his twin brother also started getting the same rash at this time....he also had been gluten-free since 1/12) So, we went back gluten free.....and the rash cleared on both boys!

9/12 I noticed all of my son's symptoms were gone!!

10/12 We went on vacation, and the gluten-free diet went out the window. I waited the 5 days and there was still no rash??? So, I continued to allow gluten. It was 11/12 before the rash started to come back, so again we are gluten-free.

Now here is the strange part.....his twin brother never had a rash untill July 2012(which also went away going back to eating gluten-free....we have been gluten-free since right after Thanksgiving) However he had ITP when he was 4 and he was admitted because his platelet level was under 7000. He was covered with petechia and bruses....I was one scared mom. His ITP resolved without medication in 6 months and has not returned. Also, at age 6 he had his tonsils and adenoids removed. In 11/11 he started blinking constantly. I had his vision checked and everything was normal....doctor told me it was a nervous habit and I should'nt draw attention to it. Anyhow, the eye blinking stopped over the summer (possibly because of gluten-free?). Now, since coming back from vacation he has started blinking again....it's hard blinks, and he says he can't stop them. I also had him tested for allergies, celiac, and zinc(yes, he has white lines on all fingernails too) at the same time I had his twin brother testes.....His allergy panel was only positive for tree and grass pollen...no foods. His zinc was normal. His celiac ttg iga was also 2 but his iga total serum was abnormal (slightly higher than the normal range) Also, now all three of my kids have small red bumps on their (3)hands and (2) on each arm....it's strange.

I should also add that my husband also has bad "acne" at 38 years old, high blood pressure(takes daily RX), has had 3 MRSA infections, scalp bumps that itch, and foot/ankle joint pains (plantar fasciitis).

I can not figure out how to post pictures???

[1desperateladysaved]

Awesome job caring for your loved ones! Keep up the good work. I would not know if it is celiac, but I know this. Once you are gluten free and your body has a little chance to recover, it can give a more forceful sign when it gets gluten again. If one does not have a problem with gluten time away and back should have not effects.

I hope your family will get to healthy and strong again!

Diana

[ampmomof3]

Awesome job caring for your loved ones! Keep up the good work. I would not know if it is celiac, but I know this. Once you are gluten free and your body has a little chance to recover, it can give a more forceful sign when it gets gluten again. If one does not have a problem with gluten time away and back should have not effects.

I hope your family will get to healthy and strong again!

Diana

Thank you! That makes sense. I absolutely see the effect gluten has on us. I would love to post some pictures of the rashes to get some opinions, but I don't know how to post pictures on here. Thanks again!

[GFinDC]

Thank you! That makes sense. I absolutely see the effect gluten has on us. I would love to post some pictures of the rashes to get some opinions, but I don't know how to post pictures on here. Thanks again!

The kids may have another gluten related condition, like this article linked describes. There no standard tests for it right now. Or they could have celiac also. You didn't get eh full celiac test panel done it seems. Some people show a response on one of the antibody tests but not the others. So it is best to get all of them done. Now that they are gluten-free though the tests won't work.

You can post an image hosted on another website like Flickr etc.. by using the image icon. Hover over the little buttons at the top of the post window. For me the image icon is under the yellow smiley face but a little to the left.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

[ampmomof3]

Here are some pictures. My son's ear rash has been DX as many different conditions...psoriasis, seborrea derm, eczema.....and the only treatment that cleared it up was going gluten-free. The pictures of the "red bumps" are on all three of my son's. These small red bumps appeared after we came back from vacation and continued to eat gluten. I have no idea what they are....they each have them on their hands, and arms.

Open Original Shared Link

[ampmomof3]

The kids may have another gluten related condition, like this article linked describes. There no standard tests for it right now. OR they could have celaic also. You didn't get eh fullcelaic test panel done it seems. Some people show a response on one of the antibody tests but not the others. So it is best to get all of them done. Now that the are gluten-free though the tests won't work.

You can post an image hosted on another website like Flickr etc.. by using the image icon. Hover over the little buttons at the top of the post window. For me the image icon is under the yellow smiley face but a little to the left.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Yes, unfortunately I did not know what to request when I had them tested. I'm not sure if getting a DX is worth the possible effects of eating gluten for them....Thanks for the link!!

[squirmingitch]

Well, it's quite clear from your experiments that gluten IS a problem! And it seems for all 3 kids. I looked at your photos in the dh photo bank & I hate to say it but I hate those mobile photo bucket things, they irritate the heck out of me as the photos are so small it's very difficult to tell much from them. All I can tell from them is that they could be dh & they could be other skin conditions. Do you have a regular camera where you could take photos again & post them so they would be a full size?

BTW, the oozing overnight is so typical of dh especially in the scalp/ear areas. Insane itching is also typical of dh but other skin conditions can itch too.

Unless you put all the kids back on a full gluten diet for a good while then any tests will be false negative.

Why would you want to test them when you know gluten is a problem? Only one answer. For school. If they are dx'd celiac or non celiac gluten intolerant then schools, military, colleges have to show special consideration when it comes to feeding them or letting them feed themselves.

BTW, this is the current FULL celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

If you decide to go for testing then make SURE all these tests are run at one time. Don't let the doc get off w/o doing all of them!

[shadowicewolf]

Ow... ow... ow..... that has to be painful....

Just a thought, have you considerd doing the genetic test for celiac? its a good first step and while it won't get the dx, it can help point in a direction.

[ampmomof3]

Well, it's quite clear from your experiments that gluten IS a problem! And it seems for all 3 kids. I looked at your photos in the dh photo bank & I hate to say it but I hate those mobile photo bucket things, they irritate the heck out of me as the photos are so small it's very difficult to tell much from them. All I can tell from them is that they could be dh & they could be other skin conditions. Do you have a regular camera where you could take photos again & post them so they would be a full size?

BTW, the oozing overnight is so typical of dh especially in the scalp/ear areas. Insane itching is also typical of dh but other skin conditions can itch too.

Unless you put all the kids back on a full gluten diet for a good while then any tests will be false negative.

Why would you want to test them when you know gluten is a problem? Only one answer. For school. If they are dx'd celiac or non celiac gluten intolerant then schools, military, colleges have to show special consideration when it comes to feeding them or letting them feed themselves.

BTW, this is the current FULL celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

If you decide to go for testing then make SURE all these tests are run at one time. Don't let the doc get off w/o doing all of them!

I figured out how to make the pictures big!! The first few pictures are of the ear rash that went away when going gluten-free...it has not returned.

The next few pictures are of the red bumps.....these popped up after starting gluten again after vacation in 10/12....

Twin A's hand on top.....Twin B's hand on bottom.....identical bumps and identical twins

These last two pictures are on my youngest son.....

[squirmingitch]

I can see where some would say the ears are psoriasis but I also know dh can look exactly like that & mine loves to get my ears too --- behind like your photos, inside the curves (those are a b%$@#), on the edges & mine especially love to get between the ear & scalp on top where the temples of my glasses sit. And I see some of the dried oozing from the place behind the ear. Those ear ones get really hot & burning too at times --- ask the kids. And when it's flaring up an itch it makes your entire ear get red as fire & drives you NUTS!

The other places on the hands look like I know dh can look like. Another signature of dh is that it presents bilaterally or symmetrically quite often. Maybe not on the same exact day or hour but within hours or a day maybe 2 later it will appear on the opposite hand, arm, leg, ear, side of body. It doesn't always get as bad on the other side but it often can. But, as with all things, there are no absolutes & sometimes it will not appear bilaterally. It is interesting about the twins. Very interesting. Of course there isn't anything in the texts about twins (& dh) but there is enough documentation about twins & what goes on with them that it stands to reason this is another example.

Thanks, these photos are much better! Easier to see in the large size. Now, if you could tell me how you posted them directly to the thread that would be great! I have been trying to figure out how to do that forever.

BTW, celiacs with dh tend not to have as severe GI symptoms & generally test neg. on both the blood & the endoscopic biopsy --- in the endo biopsy the damage is patchier & therefore much harder to find. Generally with dh the route to a dx is a biopsy of a CLEAR AREA NEXT TO

A LESION. But again, you have to be actively consuming gluten or you get a false neg.

Here are some things to read:

Interesting Reading on DH:

Descriptions of DH Types:

Help for the Itching, Stinging, Burning, Pain of DH:

DH Photobank:

Newbie 101 for celiacs

[ampmomof3]

I have noticed the red bumps appearing in a symetrical pattern....bump on each arm in about the same area, etc. Thanks for all the links!

I went to the photobucket account I opened...clicked on the picture and "copy and pasted" each one to here....hope that helps!

[squirmingitch]

It's almost impossible to get a dx when you have dh just so you know. Harder even than celiacs w/o dh. Derms are less informed than gastros it seems.

Thanks for the info. on pasting photos.

[GFinDC]

I don't know, but is it possible that their hands and fingers are a little swollen also? Just wondering. Sometimes people with allergic reactions have swelling (edema) in their hands, feet or face etc.

[ampmomof3]

I don't know, but is it possible that their hands and fingers are a little swollen also? Just wondering. Sometimes people with allergic reactions have swelling (edema) in their hands, feet or face etc.

I dont think there is any edema in their hands....the pictures do look that way though...

Has anyone had the iga total serum level test come back abnormal (high)? My son's ped doctor did not seem concerned and did not request us to come back in to have the level checked again....I'm not sure what it could mean?? Also, could the two weeks of gluten free before the blood test make the test a false negative?? I have thought about having the genetic tests....being gluten free won't affect those, will it??

[GFinDC]

The 2 weeks off gluten before testing could have an impact on the test results. No way to know for sure a this point. That's good their hands aren't swollen. My feet and ankles swell when I eat something my body doesn't like. I used to have deep crease lines around my ankles at the end of each day when I took my socks off. So that's something to check for them.

Someone did post about having very high total IgA not long ago. But I think it was not a problem. It seems like total IgA could be higher if a person was reacting to something, IMHO. But I don't have anything to back that up, just my own thinking.

Genetic testing isn't affected by being gluten-free or not. There is also Enterolabs stool testing, but I haven't used that. Some people think it is worthwhile and others think it isn't.

[Jlwhite]

Good afternoon. About one and a half years ago I was diagnosed with esophageal ulcers following a traumatic earthquake in Japan. Nearly three or four months ago, I began to have intense pain in either my rectum or colon which then sends strange pains down my left leg. That was happening about once a week and would last several hours. Recently, however, this pain has become more frequent with some added sharp pains in my lower back and upper buttocks.

Seven or eight of my family members have been diagnosed with celiac disease and I wonder if anyone could tell me whether they have had similar symptoms. Additionally I am now nearly always severely weak. My age is 32 and I am male. Can anyone help? Thank you.

[GFinDC]

There is a high amount cf celiac in your family so the odds of you having it also are fairly good. The thing to do is get tested and see what it shows. If the tests are negative then go ahead and try the gluten-free diet for 2 or 3 months and see if it helps.; Some people do have NCGI which has the same symptoms as celiac but no tests to show it. Nueropathy (nerve pain/damage) is a symptom of celiac so that part could fit.