nasalady

you know, he rarely uses flour... only when he deep fries something, which is not often, and we can work on gluten free alternatives for that pretty easily.

It's really only during the holiday season when the flour comes a flyin'. And in that case I have been the baker...

So this holiday season I am either going to have to adapt my recipes... or bake less, since half the family won't be eating it anyways!

It'll be OK....I went gluten free 3 days before Thanksgiving and I made everything I usually do, but gluten free (stuffing, pies, gravy, etc). I just used recipes I found here or elsewhere on the Internet to help me convert my recipes to be gluten free!

It was all delicious!

Oh Crap, JoAnn!!!!!!!

I recently had blood work done to re-test my thyroid and found out that it had swung low again. I had cut my dose in half in April, per doctor's orders, as I had gone hyper on my old dosage. It was attributed to my healed intestines and better absorption abilities. In the course of this, they had also run a CBC and found out I was slightly anemic again, after having had a robust RBC in April. Not badly anemic but slightly under the normal range. Hypo thyroid can cause anemia so we guessed it could be from that. Now I read here that low RBC's can be attributed to lupus. I sooooooo can understand your fear and frustration. This totally blows!

To all those recently diagnosed and shell-shocked, this is THE reason to be thankful for a diagnosis of Celiac earlier than I had and an even better reason to stay gluten-free for good. It can really screw you up otherwise! I feel like doing a Lucy Ricardo "WAAAAAAAAAAAA"!

I'm so sorry.....I didn't mean to scare and depress you too!

We do need a "crying" emoticon.

It is true that anemia can be caused by hypothyroidism and celiac disease too, which we both have! So you don't necessarily have lupus!

(((hugs)))

JoAnn

P.S. I'm totally with you on the "I wish I had known all of this about 30 years earlier" thing!! :LucyRicardo:

I have been suffering with joint pain for ten years. When I have a flare it lasts for 6 months to 1.5 years. It typically hurts on both sides, both wrists or knees etc. It only affects one body part at a time and then it moves. I have epescleritis in my right eye once a month but only for three days at a time. I also get hives on the tops of my toes if my feet get cold. I also have had the pain move to my bladder area which they said could be urethraritis. They did a cystoscopy that came back normal. I went through menopause at 30 years of age. When I'm pregnant all of my symptoms went away, I felt great but did become hypothyroid. All blood tests always come back normal, there is no sign of Rhumatoid as I test negative and never swell, I also test negative to Lupus. The medicine I use and find works is called Tramacet.

Please help shed a light on these unusual symptoms!!

Hi and welcome!

Sorry to hear about the circumstances that bring you here though! It's so difficult to suffer from multiple unexplained symptoms for years....I hope you get your answers and feel better soon!

Some of your symptoms, such as being hypothyroid and early menopause, do sound like they could be celiac-related. I'm not certain about the others.

What I can say is that whatever's going on with you sounds as though it could be some sort of autoimmune process.

On a whim, I went to the website WrongDiagnosis.com and plugged in the following symptoms into their symptom checker:

Episcleritis AND Joint pain AND Oligomenorrhoea AND Rash AND Urinary symptoms.

The only match in their system for all of these symptoms was lupus.

Open Original Shared Link

Of course, this is NOT a diagnosis, and they say this on the website (Do not use for diagnosis).

Have you ever tried the gluten free diet to see if it made you feel better?

JoAnn

Do you mind if I ask what made the doc run these specific tests? I was just diagnosed with Celiac Disease and they didn't run these specific tests on me. He did ask me if I have any joint pain and I said no because all of the symptoms I have had for so long I don't really think about them any more because I am use to them. I guess I should have said yes because I do have discomfort in my hip area when getting up out of a chair. The discomfort is right where your body folds when sitting at the top of my legs. And although it isn't all the time but there are occasions when I feel it and I thought it was because I was sitting too much but I'm really not. This is just due to Celiac Disease, right? What symptoms do you have with Lupus?

Hi there...welcome to the board!

I'm sorry to hear about your diagnosis and symptoms....celiac disease can actually mimic other diseases, so it can be difficult to ascertain if you have celiac alone, or celiac and something else too. If you want to be tested for lupus or any other "rheumatic" or connective tissue disorder, you'll probably have to see a rheumatologist. I assume that you were diagnosed with celiac by either a general practitioner or a gastroenterologist?

Short answer: I'm not sure what prompted my rheumatologist to run those tests....I didn't ask for them. Probably because I'm a new patient for him and he knows that I've been diagnosed with rheumatoid arthritis and fibromyalgia already, along with tons of other autoimmune diseases. So he wanted to see if I might have lupus.

LOOOOONG answer:

Just to give a little background:

The big problem with celiac disease, at least as I currently understand it, is not that it just damages your intestines, but that a cytokine called zonulin is released which causes your intestines to leak things into your bloodstream that don't belong there (viruses, bacteria, other stuff). This apparently sets the stage for your immune system to be overstimulated (reacting to all of the foreign bodies) and become "confused" and start attacking your own internal organs and tissues. If you're interested, they explain it much better at this link:

Open Original Shared Link

So, bottom line is: celiac disease leads to other autoimmune disorders. Some of the common ones that seem to be closely associated with celiac disease are rheumatoid arthritis, Hashimoto's thyroiditis and Graves Disease, lupus, autoimmune hepatitis, Sjogren's Syndrome, psoriasis, etc. (long list). I have most of these AI diseases already.

Anyway, I think my doctor was just trying to be thorough and check everything. He's my third rheumatologist in a year....which is the main benefit of PPO Health Insurance (I can fire any of my doctors and find a replacement!). I'm seeing him because he's a well-known specialist in the field of fibromyalgia research.

Classic symptoms of lupus include (from Open Original Shared Link

* Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks

* Scaly rash, called a discoid rash, which appears as raised, scaly patches

* Sun-related rash, which appears after exposure to sunlight

* Mouth sores, which are usually painless

* Joint pain and swelling that occurs in two or more joints

* Swelling of the linings around the lungs or the heart (causes chest pain, especially during deep breathing)

* Kidney disease

* A neurological disorder, such as seizures or psychosis

* Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)

* Positive anti-nuclear antibody tests (ANA), which indicate that you may have an autoimmune disease

* Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test.

I've had the malar rash, the photosensitivity rash, joint pain (but I have RA), unexplained sporadic chest pain, anemia (but I have celiac disease) , positive ANA, DS DNA, and anti-SMA tests (but I have autoimmune hepatitis). My problem is I've got SO MANY diagnoses....I frequently don't know which symptom to blame on which disease! Or sometimes it could be a side effect of the twenty or thirty medications I'm taking!

It's all just so discouraging sometimes! I try to stay upbeat but some days it's harder than others....

I hope you find your answers and feel better soon!

JoAnn

There was a poll on this topic (short pinky fingers) which was started a couple of years back:

https://www.celiac.com/gluten-free/index.php?showtopic=38402

If you've never voted in it, please do so to improve the statistics!!

P.S. I have celiac, and both of my pinkies end well below the final joint of the fourth finger.

There was a poll on this topic (short pinky fingers) which was started a couple of years back:

https://www.celiac.com/gluten-free/index.php?showtopic=38402

If you've never voted in it, please do so to improve the statistics!!

I don't know much about lupus testing because I have so far refused to see a rheumatologist regarding my high ANA general blood work. Call me a wimp but I have 4 autoimmune problems

and no symptoms of lupus so I don't want to hear any more bad news. My niece has lupus and I strongly believe, Celiac. She will not consider or pursue a celiac diagnosis and her lupus symptoms are out of control. I just wanted to say I know how it feels to get scary blood work and have to face the fact there may be more problems. I can really empathize with your feelings and hope you will be OK. Hang in there and I'm sure some of the lupus experts on the forum can help you!

Thanks Gemini! I hope you DON'T have lupus; glad to hear you have no symptoms!

I don't know.....maybe there's no point in pursuing this since I'm already on immunosuppressants? I don't really know what the treatment is for lupus; is it basically the same as for other autoimmune disease?

I don't know if there are any experts out there on blood work relating to lupus, but if so, please help! I saw my rheumatologist recently and got the following results; is this serious or not?

CREATINE KINASE, TOTAL: 71 (Reference Range = 29-143 U/L)

ANACHOICE SCREEN : POSITIVE (Reference Range = NEGATIVE)

ANA TITER AND PATTERN

ANA PATTERN: NEGATIVE

ANA: <1:40 (Reference Range: <1:40 negative, 1:40-1:80 low, >1:80 high)

A POSITIVE ANACHOICE AND NEGATIVE ANA IFA MAY STILL SUGGEST THE PRESENCE

OF AUTOIMMUNE ANTIBODIES. SINCE DIFFERENT TEST METHODOLOGIES POSSESS

DIFFERENT SENSITIVITIES, TESTING FOR SPECIFIC ENA AND DS-DNA ANTIBODIES

SHOULD BE CONSIDERED IF CLINICALLY INDICATED.

DNA (DS) ANTIBODY: 30 (Reference Range: <4 negative, 5-9 indeterminate, >10 high)

COMPLEMENT COMPONENT C3C: 210 (Reference Range: 90-180 mg/dL)

COMPLEMENT COMPONENT C4C: 42 (Reference Range: 16-47 mg/dL)

Please in mind that I've been on high doses of Imuran and prednisone for more than a year now; these are powerful immunosuppressant drugs....how can I be producing double-stranded DNA antibodies at such a high level while on PREDNISONE??

I asked the doctor if this means that I have lupus, and he said no. But I've looked at the criteria and I know that I match more than 4 out of the 11.

Two of my aunts died of complications of lupus and one of my daughters has lupus as well...the family curse.

I'm really bummed today.

I am pos for DQ8 and neg for DQ2 - what does this mean exactly?

Me too!

It just means that you have the less common celiac gene. There are more DQ2s than DQ8s that have celiac....but DQ8s can definitely have celiac too.

We just got back from the pediatrician's office.....Emma (3 years old) has grown a full inch since May!!

She went gluten free in January; subsequently gained nearly two pounds in 5 months (that was about 10% of her starting weight at the time). Unfortunately today we were told she has now lost about 1/3 of a pound since the May visit, but we think that's due to the throat surgery she had at the end of August....her appetite was suppressed during recovery because it hurt to swallow.

Hopefully she will catch up on the weight before her next doctor visit!

We had another pleasant surprise this week. She grew a 1/2 inch over the summer! While that may not sound phenomenal, you have to understand this is a kid who never had the typical "shooting upward" growth spurt; we celebrated when she grew 3/4 of an inch over the course of an entire year. Now she's a half inch taller than me!

That's wonderful! So glad to hear about all of the improvements in your daughter! This must be a big weight off your shoulders!

We just got back from the pediatrician's office where we found out that Emma, our 3-year-old failure-to-thrive daughter, has grown a full inch in height since May! Unfortunately she lost about 1/3 of a pound (0.15 kg), but we think that's because of her throat surgery at the end of August. Emma's been gluten free since January....I really think that this is why she grew so suddenly.

So *happy dance* for our daughters and their progress on the gluten free diet!!

JoAnn

We are both 50 yrs old now, and he is disabled & I have bone cancer and am disabled also and on social security & food stamps so money is so very short for us these days, and I know now that I have to buy new items for him because of the cross contamination, but let me ask you is there a way I could wash the things pots etc till we can save up to buy all new?

Someone on this site who is a biochemist said that if you wash things with a strong bleach solution, this will denature the gluten, which is a protein. So that should make your old pots and pans safe.

Good luck with everything!

JoAnn

My 11 month old son is allergic to soy, eggs, milk, and meat. This is probably something he will outgrow by the time he is three.....but until then we need to find something to feed him. I have celiac disease. Does anyone have ANY recipes that would fit all of these criteria? I could add non gluten free things to his if I had to, but I'd prefer if there was something we could all eat.

Please take a look at the following wonderful gluten-free cooking blogs:

Open Original Shared Link

Open Original Shared Link

Not all recipes will be free of milk, eggs, and meat, but both Elana and Karina have a number of Vegan recipes. Karina has discovered over a period of a few years that she is sensitive to a number of foods and has eliminated LOTS of things from her diet. I believe that all of her recent recipes are Vegan.

Good luck!

JoAnn

I read this and was wondering if anyone has ever had these on there feet ? Because my husband gets these on his feet only and he has been checked for diabeties and doesn't have that..

Dermatitis Herpetiformis (DH) is skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks. DH patients can have gastrointestinal damage without perceptible symptoms.

Hi again,

As I said in my reply to your previous topic,

https://www.celiac.com/gluten-free/index.php?showtopic=61915

my husband has had it almost everywhere.....but I didn't actually specify his feet. He has DH on his feet right now, on the top of them extending onto his ankles.

Where does your husband have blisters? On the tops or bottoms of his feet? Do they turn purple as they heal?

JoAnn

The dr thinks now my thyroid may be involved in the autoimmune process. She won't check that though because she's a hematologist. Really, I'm so over this. I get one thing fixed only to have something else crop up. What makes me incredibly angry is I was undiagnosed for so long! Surely, I wouldn't have all this trouble if my immune system hadn't been running amok for so long? But now, I get the joy of more testing, more researching and everything else that comes with it.

I've done well with the celiac diagnosis. Heck, I even have some plans to start a related business. But, I'm having trouble staying positive with all this other stuff piled on top of it. Am I never going to be well? I'd like to take a time machine back to when the first dr said it was, "probably nothing."

I'm a sad, discouraged celiac this am with more balls in the air than I think I can manage.

Where's the crying icon?

I'm SO sorry that you're going through this....and boy, do I know where you're coming from!! All of the autoimmune diseases that I've developed over the years due to a lack of a diagnosis of celiac disease.....

Truthfully, I don't know if I'll ever be "well". I guess I've been just hoping to be significantly better. My Hashimoto's thyroiditis wasn't diagnosed until my thyroid was no longer functioning. It's basically dead. My autoimmune hepatitis wasn't diagnosed until Stage 2 liver damage (well, it could have been worse....Stage 4 is cirrhosis). I'm in a wheelchair because of rheumatoid arthritis and fibromyalgia.

However, the gluten free diet is supposed to help with the other autoimmune diseases. Some studies have shown that the anti-thyroid antibodies have significantly decreased on a gluten free diet, for example.

Also I'm starting to think I personally need to be on a stricter diet, such as the SCD so many are following on this site.

What has given me hope and motivation to stick with the diet, and even to consider a more restrictive regimen is the possibility of ALL of my conditions going into remission. Lots of people on this site have said that happened to them (gradually, over a year or two or even longer), and they were just as sick as I am now.

As Emily Dickinson once said,

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all......

Sorry I have nothing better to offer than this....I know it's sentimental!

(((hugs)))

JoAnn

P.S. I don't know if you can post pictures here, but many people post them somewhere else then post a link to the pics here.

WoW what a wonderful site this is I am learning more in a couple of minutes here then I have learned in the last 3 yrs of my husband having Celiac.....

My husband gets blisters only on his feet not all the time we have not been able to pin point or how to pin point when he does get them, but he does terrible ones makes it so hard for him walk or stand on his feet and at night it gets really bad his feet burn and itch and hurt him so badly, the doctor checked him for diabetits but says he does not have it, and then we asked the doctor if the celiac would cause it and he said no, and here I come and see a post with pics and they are the same ones that appear on my husbands feet just worse because of him having to wear shoes and socks...Is there something we can do or tell the doctor to do & check this coming 15 when we see him ? When he breaks out again I will post a pic them if that is ok to do so here ?

Hi and welcome!

Blisters are a hallmark of DH, as you probably know since your husband already has a diagnosis of celiac disease....that's terrible that they appear on his feet! My husband has had DH pretty much everywhere at one time or another....

Do your husband's blisters turn purple when they begin to heal up? If so, do the purple spots linger for a very long time (weeks or months)? The purple marks while healing are one of the classic characteristics of DH.

If not, has the dermatologist considered that it might be palmoplantar pustulosis (PPP)? This is a somewhat uncommon form of psoriasis (another autoimmune disease) where you can develop pus-filled blisters on your hands or feet, along with deep painful cracks in the skin. My husband has this too, poor guy, but on his hands not his feet.

Here is a link where you can see some pictures of this type of psoriasis:

Open Original Shared Link

Unfortunately celiacs can have any of several different types of skin problems, not just DH but psoriasis, eczema, and keratosis pilaris.

Good luck in finding your answers! I hope your husband begins to heal very soon!

JoAnn

i never had liver chemistry problems in the past but a recent test showed an elevated ALT of 52. everything else was peachy. Does this now mean im going to develop hepatitis? i know for a fact that i got glutened the week prior to the blood draw and am hoping it was either that, lab error or a variant. going for a retest in 2 weeks but im worried about this. anyone have a similar experience?

Jason,

It very likely has to do with the glutening of the week prior....as I mentioned in my earlier post, it is common to have elevated liver enzymes with active celiac disease. jerseyangel also said that her enzymes rise when she is glutened.

Did you read our replies??

I hope I didn't worry you with my mention of autoimmune hepatitis!

During serious flare-ups of my autoimmune hepatitis (aka AIH) before my diagnosis, my AST/ALT levels tended to hover between 1400 - 3600! Compared to that, 52 is no big deal. I mean, 40 or lower is normal! You're not that far from normal.

If you're really worried though, you could always ask your doctor to do a liver biopsy and run the AIH antibody blood tests (ANA, ASMA, or anti-LKM). But 70+ percent of those with AIH are female, so statistics make it less likely for you.

Good luck with your re-test!

JoAnn

I am hypothyroid and have slightly elevated ALT AST liver enzymes on and off for a couple years and I have been having generalized itching/burning skin that comes and goes all over different areas especially my upper back and stomach for the past 2 years now but is starting to happen every day for the past 2 weeks. I sometimes have dry throat and cough. I have an appointment with my Gastro doctor but they can't get me in for another month. I tested negative for hepatitis and abd ultrasound looked good last year, so I was wondering if these symptoms could be celiac? I am hoping that's what it is and not some serious liver disease.

Hi and welcome!

Sorry about the circumstances that bring you here, though.

Yes, it's very common to have thyroid issues with celiac disease. Please be aware that if you do have celiac disease, you're far more likely to have or develop other autoimmune diseases as well. Lots of us have Hashimoto's Thyroiditis or Graves Disease, which are both autoimmune diseases of the thyroid and have been found to be closely linked to celiac disease.

As to liver problems, you can definitely have slightly elevated liver enzymes with celiac disease alone. But when you say you "tested negative for hepatitis", do you mean viral hepatitis (such as Hep A, B, C, D, E), or did your doctor run other tests as well? There are lots of different kinds of hepatitis...including an autoimmune kind (which I have). In autoimmune liver disease, your immune system creates antibodies that attack your liver. Did your doctor test you for those antibodies (ANA, ASMA, or anti-LKM)?

If you're having itching without a rash, it could be related to the liver....but do you have a rash when you itch? If so, does it look like blisters and does it turn purple when it heals? That could be dermatitis herpetiformis, the "celiac disease of the skin".

There are actually lots of skin problems associated with celiac disease; celiacs frequently have psoriasis, eczema, and/or keratosis pilaris, among other things.

Also, you should know that if you're planning to have blood testing done for celiac disease, please continue to eat gluten-y foods such as wheat breads and pastas (and lots of them!), until AFTER your tests are done. If your doctor is planning to biopsy your small intestine, you must eat gluten until after that procedure is done as well.

There's plenty of time to start the gluten free diet afterwards....and maybe you will want to try it even if all of your tests come back negative. After all, false negatives seem to be quite common, and it can't hurt to find out if the gluten free diet helps you feel better!

In any case, I wish you the best of luck at getting to the bottom of your issues! Please let us know what happens!

JoAnn

the corn is reacting badly now. I have bad stomach cramps. I usually get this within about 20 minutes of eating potatoes, so i am feeling so sorry for myself today!

Dairy and lactose I am not sure of. I have been lactose free for 3 months and completely gluten free for 7 months. I have just gone off deadly nightshade for about a week. I am still using butter and lactose free milk which i seem to be fine on (crossing fingers and toes). I am getting a test for dairy so i will see on monday or tuesday.

I am taking multivitamins that i will go off in case there is something in them!

Sorry you're having these problems! I can relate, unfortunately.

I'm starting to think I need to avoid ALL grains (rice, corn, sorghum, millet, etc...). I've heard this from a lot of people on this board, especially the people on the Specific Carbohydrate Diet. You might be interested in this....it's the diet people have turned to when the gluten-free dairy-free diet isn't working as well as they expected it to.

There's a separate thread here for the SCD diet (warning: it's incredibly long! 150 pages!!):

https://www.celiac.com/gluten-free/index.php?showtopic=54285

Anyway, good luck!!

JoAnn

I have made the decision regardless of the biopsy results I will be starting him on the diet, if he gets better that is all the proof I need and I am almost certain that is what he has. I am going to hold off just until next Friday for his endoscopy, but as soon as he leaves regardless of what they tell me I am starting him on it. I am not going to wait years for them to diagnose him while he suffers. Thanks so much for your response!!!

FYI, going gluten free can be a bit of a challenge, because gluten can be anywhere.....you may have already realized that you'll have to replace a lot of your kitchen utensils, pots and pans, toaster, etc. Or you could buy a set for him and set up a gluten-free area in your kitchen where no gluten is allowed. That's harder (having both gluten and non-gluten foods in your kitchen) because of the risk of cross-contamination....but you'll have to decide what's right for your family.

But don't be discouraged! It definitely gets easier! As to meal planning, the easiest way to start is to identify which foods you eat now that are naturally gluten free (meat, fish, chicken, eggs, nuts and nut butters, veggies, fruit, rice, polenta, potatoes, corn tortillas, etc.). For processed foods such as corn tortillas always read labels to make sure they haven't put any wheat in there.

Here's a great article on how to go gluten free (a post from Karina's Kitchen):

Open Original Shared Link

Good luck with everything...please keep us posted!

JoAnn

My 3 year old son has been gluten-free for almost 2 years, he was born weighing almost 9 lbs, from birth gagged, choked, reflux type reactions(also horrible diarrhea)...then got pneumonia at 10 weeks old and just continued to be sick the rest of the year his weight continued to decline...doctor gave DNA tests for celiac and had DQ2---soooo.. he has been gluten-free, DF for almost 2 years and he only weighs 25lbs, still can wear 18month clothes...and is in the 2% in both weight and height...once off gluten and dairy he rarely ever gets sick..does act hypoglysemic. Any thoughts?(was checked for 102 food allergies and nothing showed up)

My Emma is the same, except she has only been gluten free since January. She is 3 years old and only weighs 22 pounds. I have had the entire house on the gluten free diet since January since all 4 of us turned out to be either celiac or gluten intolerant.

But I'm slowly beginning to eliminate ALL grains from our diet, along with sugar, refined food in general, etc....sort of along the lines of the Specific Carbohydrate Diet or the Paleo diet. I have a feeling that it's not just gluten that bothers us, since my husband and I both still have GI symptoms after eating homemade gluten free bread, or eating rice or corn. I truly think we will have to get serious here about eating healthy....just stick to natural, hunter-gatherer foods, like meat, fish, chicken, eggs, nuts, vegetables and fruits in moderation.

For more info, please see my reply on the following thread:

https://www.celiac.com/gluten-free/index.php?showtopic=61837

Good luck!

JoAnn

My son is being tested for Celiac disease. He has had chronic diahrea for about 2 years now which has the worst smell in the history of the world (seriously whole house smells like a portapotty), weight loss and no height growth, but a constant appetite...he is ALWAYS hungry and will eat until I MAKE him stop, he continues to say he is hungry, then within 8 hours he flushes his system again. He bruises extremely easily and his hair is starting to fall out all over my poor babys head. He gets irritated by little things easily, he has a very bloated stomach and stick like extremities, he has horribly dry skin and gets these rashes on his bum that bleed and puss and are nothing like diaper rash. He has been tested for diabetes, parasites and a bunch of other things. I finally took ALL the symptoms in together (didn't think any of them were related before) and I have been waiting on his Celiac test for a week now, and just stressing. Does this sound like Celiac or does anyone know what else it could be? Doc is pretty sure thats what it is, but they have been saying that for 2 years now about everything and I am beginning to wonder if they will ever diagnose my son with anything. Thanks to anyone who can provide ANY advice

It sounds VERY much like celiac disease: chronic diarrhea, weight loss, bloated stomach, hair loss....these are some of the classic symptoms. I'm so glad he's being tested, but please be aware that the tests have a high rate of false negatives, especially in small children. My own granddaughter Carly had to be biopsied twice before they found any damaged villi, even though she had exactly the same symptoms as your son, and was just skin and bones. She never did have a positive blood test, even though she DEFINITELY has celiac disease!

The tests you refer to...are they just blood tests? Your son will have to continue to eat gluten-y foods until after the biopsy, if the doctor has not yet done that, and if you decided that it's necessary.

The rash on his bottom....does it look like blisters? Does it turn dark purple as it heals and do the purple spots stay there for weeks or months? If so, please take him to a dermatologist and have them biopsy his skin when he's having a breakout and test him for Dermatitis Herpetiformis, which is the rash that sometimes accompanies celiac disease (it's considered to be "celiac disease of the skin"). The derm should biopsy the clear skin next to a blister or lesion, not directly on the rash itself.

In any case, whether his tests come out negative or positive, please start him on the gluten free diet as soon as possible. The very best test for celiac disease or gluten intolerance is the diet itself, because if he is gluten intolerant, he will start to improve quickly on a gluten free diet.

Here is a helpful link about how to go gluten free:

Open Original Shared Link

Good luck!

JoAnn

"I can't imagine that it would be safe to eat ANYTHING that came out of a pizzaria if you were extremely sensitive to cross-contamination."

I met with the owner of our local Garlic Jim's. He was VERY nice and knowledgeable reagrding CC. He gave me a tour of the premises. He showed me where they store and process their flour for the regular pizzas and where they keep the gluten-free dough. There is also separate counter-top and utensils and sauce is kept in squeez bottles to aviod CC. They apparently tried a variety of crusts before they decided on the one they are currently selling. So I guess that each restaurant uses different gluten-free crusts.

We love the crust and my daughter is thrilled to eat pizza again.

Garlic Jim's is the BEST as far as we're concerned, and both my husband and I are very very sensitive. I too asked about their protocol and was assured that they took great care to prevent cross-contamination by having a completely separate area for gluten-free baking.

Check out their unbelievable gluten free menu!

Open Original Shared Link

And here are all of their locations in California which currently serve gluten free pizza:

Burbank NOW OPEN! Call 818-556-JIMS (5467)

2128 N. Glenoaks Blvd. #103 Burbank CA 91504 Map

Tel: 818-556-JIMS (5467)

Hours: Open Sun-Thurs 11am-10pm; Fri, Sat 11am-11pm

Now serving gluten-free pizza! Peel-A-Deal fundraiser participant.

Pasadena (on Colorado Blvd) NOW OPEN! Call 626-844-3546

2982 E Colorado Blvd. #110 - Pasadena, CA 91107 Map

Tel: 626-844-3JIM (3546)

Hours: Sun - Thurs 11am-10pm; Fri - Sat 11am-11pm

Now serving gluten-free pizza! Peel-A-Deal fundraiser participant.

Redondo Beach NOW OPEN! Call (310) 543-5500

1876 S. Pacific Coast Highway Redondo Beach CA 90277 Map

Tel: 310-543-5500

Hours: Open Everyday 11am-10pm

Now serving gluten-free pizza! Peel-A-Deal fundraiser participant.

Simi Valley NOW OPEN! CALL 805-526-1500

131D Cochran St Simi Valley CA 93065 Map

Tel: 805-526-1500

Hours: Mon.-Thur. 4pm-10pm; Fri.-Sat. 11am-11pm; Sun 11am-10pm

Now serving gluten-free pizza! Peel-A-Deal fundraiser participant.

South Pasadena (on Fair Oaks Avenue) NOW OPEN! Call 626.799.JIMS (5467)

700 S. Fair Oaks Avenue, Suite J - South Pasadena, CA 91030 Map

Tel: 626-799-JIMS (5467)

Hours: Open Daily 11am - 11pm

Now serving gluten-free pizza! Peel-a-Deal Fundraiser Participant.

Arrowhead Mills flours. It was definitely CC, and happened with more than one type from them.

Yes! I was glutened by Arrowhead Mills millet flour.