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Member Since 29 Oct 2010
Offline Last Active Jan 25 2013 09:50 PM

#818339 Kissing (I Know There Have Been Others Like This)

Posted by on 17 August 2012 - 04:08 PM

Yeah, I get sick after kissing my man after he eats gluten and even after he brushes.... so I said, "Hey man, did you know that we Celiacs have to replace pots and pans that cannot be cleaned sufficiently enough of gluten in order to keep us safe?" :blink: :unsure: ...after giving this some thought.... :o
He decided to be gluten free 99.9 % of the time. :rolleyes:

A lot of people report that they are ok with kissing after their partner brushes...but I wasn't. And we tried the experiment several times just to be sure. It was very obvious.

I let him keep his teeth...but no kissing the days he chooses to eat gluten. He tells me and we just take a day off if he eats gluten. Luckily he doesn't think gluten is worth it very often.
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#818328 So The Verdict Is...

Posted by on 17 August 2012 - 03:01 PM

Thank you, MitziG, for your encouragement. I really do appreciate it!

Was your positive TTG and IGA or IGG, if you don't mind my asking? It seems like there is more confidence out there in the IGA, for someone who isn't IGA deficient, than for the IGG. When I called the University of Chicago Celiac Center, the lady that spoke to me thought that if I were a patient there they probably would not even recommend me to get a biopsy, with the blood result I had.

Anyway, after doing some reading I am determined to do better with cross-contamination. I moved the bread machine and flour bins down to the basement (I have to make bread for my family and also my parents) so there won't be flour flying around in my kitchen. And I'm going to be more careful with the children's food too.

You might want to wear a mask if you are going to be baking with wheat flour. It is so easily airborne that you can easily breathe it in and make yourself sick by swallowing some of it in the form of airborne particles. If you really think you are Celiac, you might not want to keep baking with wheat flour. Cross contamination is a huge issue anyway, even without wheat flour in the house. I would recommend buying their wheat bread or baking gluten free bread for everyone in the house. It would eliminate the biggest risk you have. Then you can start looking at your cutting boards, baking pans, and cupboard shelves, and colander. It's a huge task to get rid of the sources of gluten, but well worth it in the end if that is what is causing you to feel lousy. I don't know anything about the testing, but I do know about breathing in wheat flour. :(
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#818320 2 Year Old With Dermatitis Herpetiformis

Posted by on 17 August 2012 - 01:52 PM

Yes, if your child has DH, then your child definitely has Celiac. You have some evidence in that direction since he healed by going gluten free. However, if you want the biopsy he will have to eat gluten again in order to test positive. Some people do not ever test positive on blood or biopsy and yet they have DH. Your Dr. may know the inaccuracy of testing and since your child has lesions in the classic and typical places and of the classic and typical presentation of DH, she may be fairly confident that it is indeed DH, particularly if the doc knows that it responded well to the gluten free diet.

An endoscopy is not needed to diagnose DH. It is often negative in DH patients, and yet they are indeed Celiac. The skin biopsy can be negative and it often is. Yet, the rash clears up on going gluten free.That is the telling part.

As to how a 2 year old would get glutened accidentally. I agree with the above poster who said that DH is VERY sensitive to traces of gluten. Therefore if your child were crawling on a floor where other children had eaten cookies or crackers, he would easily get contaminated hands, or pick up a crumb and put it in his mouth, or play with children who had just eaten cookies or cracker and get glutened by transfer from hands or toys. Kids put their hands in their mouth a lot. Unless the tables are cleaned right after cookies and crackers are served then the table too, could be a source of gluten. These are possibilities if it happened at the nursery.

I have DH. I got a reaction from handing out cookies to kids and then eating my gluten free food. This was before I knew how very sensitive DH is to cross contamination. That was more than enough to cause a DH outbreak for me. I learned to be meticulously careful from that incident. It isn't from touching gluten. It is from gluten being on your hands and ending up getting ingested as you touch your mouth or food. It would be quite easy for this to happen to a toddler.

If you want a definite proven diagnosis with testing, you need the dermatologist. I don't think an allergist will help with diagnosing DH/Celiac, except to tell you to eliminate gluten and see if it makes a difference or maybe to test your child for wheat or other food allergies. DH is an autoimmune disease not an allergic reaction so the most an allergist can do for you if you suspect DH is tell you to make an appt with a GI or a Dermatologist.

I think you should at least consider contacting the pediatrician for a topical that might help relieve your child of the pain and itching at least temporarily. Nothing but being gluten free will help the rash if it is truly DH. But knowing how maddeningly itchy and painful it is, I cringe that your child has to suffer with it. We adults can medicate ourselves with OTC benzocaine products like solarcaine, or pain relieving ointment with benzocaine in it (Walgreen's brand). However, you want to ask the Dr. before you put these on your child. I'm not sure if benzocaine can be toxic to children or if there would be another type of itch/pain relief your DR. could order.

One last thing I will mention is that DH is often sensitive to NSAIDS so if you give your child Tylenol or Ibuprofen it can cause a flare or make it worse if it is indeed DH. This doesn't happen to everyone with DH, but it happens often enough that NSAIDS are cautioned against in the medical literature regarding DH. I happened to react to NSAIDS terribly. I hope this isn't the case for your child, but wanted you to know just in case.

I hope you can get some answers and a proper diagnosis, but even if your child tests negative, wanted you to know it still could be DH. The location and the description of the presentation of it are consistent with DH.

Hope I haven't muddied the water for you too much. I hope your child feels better very soon. You're a good mom to keep asking questions and doing what you can to help your child. :)
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#818204 Grinding Chia Seeds

Posted by on 16 August 2012 - 06:31 PM

Oh, well, I just thought it might work. I use one of those teeny weeny ones that are only good for chopping garlic! Hey! Maybe a mortar and pestle? haha! Let's bring back the old tools! Isn't that what they used before food processors were invented? I guess if all else fails, you know the hammer and ziplock works! Hey! I can use that to flatten some chicken breasts huh?! I've been wanting a meat pounder but maybe you just invented one for me! :)
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#818007 So More Doctor Fun...

Posted by on 15 August 2012 - 06:41 PM

I can help with #5 and #6.

#5- Vitamin D3 is a teeny tiny pill separate from the multi-vitamin, but if you are trying to keep him soy free you might need to search a bit. I use Leader brand vitamin D3 because it is soy-free. It is a 1000mg tablet.

#6 Carlson Nordic Omega 3- This is fish oil, easily found in any health food store. I also take this one.

The other things I do not know about, but I would agree with keeping him off of gluten and dairy because you have seen good results with that. The thing about food sensitivities is they can be delayed reactions making it really hard to tell what is bothering a person and what is not. But then, I think you already knew that. :)
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#817956 What Is Wrong With Me ? :/

Posted by on 15 August 2012 - 12:33 PM

Hi Arian,

I want to try to help you figure this out. Were the pumpkin seeds in the shell? Were they raw or roasted. Many Roasted pumpkin seeds in the shell have a white coating that is Salt and Wheat. I used to eat pumpkin seeds all the time before I knew I was Celiac. Now I can't have them, due to the salt/wheat coating. But even shelled or raw pumpkin seeds can be contaminated with gluten if they are run on the same lines. Often nuts are contaminated with wheat and the same could be true of seeds.

How long have you been gluten free? The reason I ask is because a lot people are sensitive to a lot of foods until they heal. Are your symptoms the same ones you get when you eat gluten? If you have the package...read the ingredients to be sure it didn't contain wheat. The next thing is to figure out if they were cross contaminated.

Were your symptoms like what happens with gluten or like what happens with an allergy? A pumpkin allergy is rare, but it CAN happen. I googled pumpkin seed allergy and got this....
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#815457 Another Newbie: Could This Be Dh?

Posted by on 01 August 2012 - 08:04 PM


Welcome! Oh that looks painful and miserable but thank you for posting pictures.
This is just my opinion.
Yes, your rash/sores look like DH.
The first two pics are the consistent with what the rash looks like in the latter stages of healing. Some people describe them as presenting like bug bites, or mosquito bites.
The third and fourth pictures clearly show raised edges on the lesions which is also consistent with DH.
The dark purple discoloration where healing has taken place is also consistent with DH. When total healing occurs you can have hyper-pigmented spots or de-pigmented spots that appear totally white where the lesions once were.
The fact that it responds favorably to being gluten free and the fact that it is intensely itchy especially at night are both consistent with DH.
Have a look at our DH photo bank.
Your long term history of migraine and "IBS" make the diagnosis almost seem a certainty. Again this is only my opinion.
You can ask your Dr to refer you for a biopsy if you want testing. A biopsy taken from the clear skin will diagnose Celiac if there are IgA antibodies in the skin.

Another clue to the fact that that it is most likely DH is the fact that steroids did not solve the problem. DH will only totally heal if you are strictly gluten free, though it is known to come and go in cycles or to heal for brief periods of time.

Do some reading on the DH forum. Ask questions anytime.

If you choose to fore-go testing, the rash will eventually heal if you are strictly gluten free. Some of us have to limit iodine for a while for the lesions to heal. There is a benzocaine pain relieving ointment by Walgreens that helps the stinging and itching temporarily. Solarcaine can help too. Thanks for posting your pictures.
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#815418 Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

Posted by on 01 August 2012 - 05:40 PM

When I first suspected DH, I too, was confused because my rashes did not resemble the photo's in medical literature. However, later in the course of the disease, like several years later, the rash DID resemble the ones in the medical literature. Have you checked out the DH photo bank? Does your rash resemble anything there that people have suspected as DH? It seems from 2 years of reading descriptions here and looking at photos, that DH in it's less severe forms is not recognized as DH. That is a real problem for people trying to get diagnosed early when the rashes begin. I don't have a rash anymore so I can't post a picture, but I would encourage you to post a photo in the DH photo bank especially since you are diagnosed. It might help others. :)
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#815386 Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

Posted by on 01 August 2012 - 03:25 PM

Hey Squirmy!
Here is an article to back you up on the iodine connection!

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#815150 Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

Posted by on 31 July 2012 - 06:05 PM


I am clear of DH now but I had it for 7 years and it took a year and a half to heal. I was constantly in the same confused state as you, it seemed it was always something..Love the name by the way! I agree with Squirming that your derm sounds knowledgeable about DH. I had to limit iodine, you can see Thyca.com for how to do that. I also noticed a direct flare with too many Salicylates. NSAIDS can make DH flare. Squirmy is right, gluten is the main enemy. The stinging and burning were much worse in the beginning of healing and being gluten free. Later flares were less severe and less painful. Now almost 2 years gluten free, I only notice a few tiny blisters in a variety of places where I never even had DH before, and it doesn't last very long. Like one or two weeks.

Does the two year count start over when you get a flare or get contaminated? No one knows but your skin....and he/she is not talking! Seriously no one can know how long it will take them to heal or how long the antibodies will remain active in their skin. IgA is the problem, but it isn't possible to know how much IgA you have left or how long you will remain actively flared or in remission.

Just do the best you can every day to be totally gluten free and to try to figure out your other sensitivities. I reacted to salicylates and iodine terribly while I was healing, but now I don't seem to react to them. So it does get better, even if it takes a long time. I don't want to discourage you by how long it took me to heal. There have been many others who healed in a matter of weeks or months. Good luck! And keep your Dermatologist!
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#813439 Losing Hope...

Posted by on 24 July 2012 - 05:03 PM

Welcome Kswan08,

You are right to be concerned about the weight gain. Have you had your thyroid checked? Hashimoto's can cause weight gain. TSH level doesn't always show if you have Hashimoto's. You should ask for a full thyroid panel including tests for Hashimoto's and Graves antibodies.

Having a negative test result does not mean that you are not Celiac. The tests are not 100% accurate. In fact there is something like 30% of false negatives. It seems clear from your elimination experience that you are on the right track here. There may be other things going on too, like Hashimoto's or something else medical. But when you test negative, the next thing to do is to go completely gluten free for at least 3 months. You are feeling better after just 3 weeks so you know you are on to something.

What are you eating? If you tell us what you eat, it might help. If you eat a lot of gluten free processed foods or carbohydrates you may have to watch that. They can cause weight gain.

I hate to hear that yet another Dr. thinks Celiac is a fad. It isn't. I was sick for many years too. At my sickest I had gained weight to 200 lbs and I'm only 5 ft tall. It completely resolved but it took 6 months or so before my body started dropping weight. The weight gain was completely out of control and I wasn't even able to eat. I think it's malnutrition and malabsorption. It takes a while to heal. What you can do for yourself is ask your Dr. to test your thyroid and ask for your vitamin levels to be checked. You need vitamin supplements and eat mostly whole foods like meat, vegetables, fruits, and nuts. Limit carbohydrates. It took nearly a year for my metabolism to completely stabilize. Don't worry about whether it's called Celiac or Gluten Sensitivity...the thing is gluten clearly seems to be a problem.

And watch for cross contamination because that can keep the inflammation going even when you think you are gluten free. Hope you feel better soon.
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#812641 The Gluten Toaster Oven Of Doom

Posted by on 21 July 2012 - 07:37 PM

Great idea on vacuuming it!
And I agree with scrubbing the crap out of it.
I was in the same position not being able to afford a new toaster oven when we first went gluten free.
I kept the toaster oven. Used foil. But I was so paranoid of gluten at that point...I just left the bottom alone and didn't touch it. You should have seen me putting food in and taking food out....it was hilarious...like I was doing surgery or something. But I figured well, gluten can't jump! Mistake was.....my son, a teen, also had to be gluten free and we got a bit too casual. One day I put the toast in carefully and he took it out of the oven and brought me my share. I got very sick from gluten, but couldn't figure it out. I finally asked enough questions that I learned my son was taking the toast out of the toaster oven, and a piece fell on the open pull down door of the toaster oven and he picked it up and put it on the plate. My plate. Arrgh. I hadn't shared the hazmat procedure for the oven clearly enough. I also almost could not believe that this would gluten me....but it did. I was so sick from that incident that suddenly I had enough money to buy a new toaster oven!
True Story! And the hazmat procedure was used when I deposited the gluten toaster oven in the dumpster.

So if you are careful it can be done...I should have scrubbed the crap out of it and vacuumed it. Just wanted you to be aware of what can go wrong if you don't. :) Good luck.
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#812219 Update....... Confused More Than Ever

Posted by on 19 July 2012 - 08:13 PM

Here is the Yes/no for you.

Symptom relief so far:

Foggy brain almost gone- YES!
Sleeping better- YES!
More awake during the day- YES!
Sinus are clear for the first time I can ever remember- YES!
Post nasal drip is gone (this I have had since I was a child and it has never gone before)- YES!
Gerd is gone! No reflex, no burping, no food coming back up.- YES!
Bad breath during the day going. I used to be able to taste it. - YES!
Bloating receding- YES!
Stools changing towards solid but still tan colour and float.- YES!
Anxiety gone (normally in this situation I would be having panic attacks waiting for results)- YES!
Irritability going.-YES!
Brain working again. I am not fumbling for words anymore and I feel sharper.-YES!

My sister has just been diagnosed -YES!

Do positive biopsies diagnose Celiac? -YES!
Is it commonly known as the Gold Standard of diagnosing Celiac?- YES!

Is there any other disease that has all these symptoms AND they all go away when you go gluten free?-- NO!

Celiac?- YES!

I think you are diagnosed...
And I think any other Dr. than the one you have would say you are Celiac.
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#812203 Problems With Ignoring The Condition

Posted by on 19 July 2012 - 06:18 PM

What you are describing sounds like a neurological reaction of a Celiac person to gluten.

Many of us get jittery, anxiety,ADHD, can't focus, brain fog symptoms when we ingest gluten.

ADHD symptoms have been scientifically linked to gluten especially for Celiacs.

I hope you choose to come back to your gluten free life.

Many people feel the results of going gluten free really quickly.
Others take longer. I could tell in 2 days of going gluten free that I was getting better.

Go gluten free strictly and see if it clears up for you. I bet it does. I have read dozens of times that people feel mental clarity like never before once they go gluten free. It happened to me too. Calmer,peaceful, happy, good humor, no anxiety or brain fog or can't focus ADHD symptoms anymore for me.

I get Glutened.
Then it all comes back really really fast.

You'll have to eliminate it and see if it helps.

Don't worry about the time you were not gluten free.
Just start doing it now....
I bet you will feel a whole lot better!
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#812142 Misdiagnosed?

Posted by on 19 July 2012 - 01:59 PM

This is dedicated to MysteryDiagnosis2012...
...just because she loves cupcakes...

I say, "Let them eat cake! But let it be gluten free cake!"

(best gluten free cake I ever ate in 2 years of being gluten free!)

Chocolate Cake

2 C. Coconut Flour
1 C. Cocoa
1 and 1/2 tsp. Baking Soda
1 tsp Salt
1 C butter
1 and 3/4 C. Sugar
(if you don't use sugar may have to tweak the recipe for sweetener of your choice)
1 and 3/4 C. Half n Half- or in case of dairy free- Milk Substitute (Almond, Coconut, Hazelnut) Not soy!
1 tsp. Vanilla
9 room temp. eggs (put em in hot water for 15 min. if you are in a hurry)
1/4 C. Melted and cooled coconut oil

You can dump everything together and beat it for 7 to 10 min.

Makes great cupcakes, 2 9"Rounds, or one 9x13
Baking time will vary but the 9x13 takes bout 45 min.

Bake at 350 until toothpick inserted comes out clean.

This will save your sweet tooth and let you stay gluten free MysteryDiagnosis2012...plus it's loaded with fiber.
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