ShayFL

You do not need a doctor's permission (nor our approval) to put him on a gluten-free diet. You have motherly instinct. It is rarely wrong. Do what you feel is best for your son. The diet is healthy and if he responds well to it, then you have your answer and he gets WELL. This is the goal.

If after you give it a good go for 3-6 months there is absolutely no difference, then you can keep looking in all of the other areas.

It cannot hurt.

And since you say you and your husband both have symptoms, the best thing is for ALL of you to go gluten-free and have a 100% gluten-free household. That is what I did. I am the only one Gluten Intolerant. But it was soooo much less stressful for us all to eat gluten-free. No worries then of CC.

Wishing you all well!

That is this one:

Endomysial AB IgA Positive

Very specific to Celiac.

You can also ask for a genetic test.

Virtually certain.

They will want to do a biopsy on you now for a "gold standard" dx. However, even if the biopsy is negative and you dont get an official dx, many in here can tell you that they had a dramatic POS response to the diet in spite of a NEG biopsy.

Some Doctors would dx Celiac with your labs plus a POS response to the diet without biopsy.

I assume you had symptoms. You will start to heal as soon as you go gluten-free. For some relief is nearly immediate. For others it does take time, but healing does happen.

You will want to keep eating gluten until you are all done with testing/biopsy. But as soon as the biopsy is complete start gluten-free diet. And get well.

Come in here when you are ready to start the gluten-free diet. We are here to help!

Someone said the new Glutino Cheddar is close.

Not at all surprised you are the first to find these.

I cannot do chocolate, so that passionate mango sounds divine.

Im with elonwy...low waste and stretch. Perfect. Im short too. I like the slight flare leg. It is flattering on me.

Make sure you pack plenty of your own food on that 5 day trip. Even if you mostly eat nuts and fruit brought from home. Canned tuna. Your own gluten-free crackers. Be prepared. Be very prepared.

My Mom actually has this happen fairly regularly. But refuses to look into Celiac or gluten-free. I used to have it happen now and again. You are right.....yuck!! But have not had it since gluten-free.

A Dx based on those criteria depends on the doctor. Some will. Others wont. You can keep doctor hopping until you find one who will. But my question would be, why do you want an official Dx (via biopsy)? If ALL of the other criteria are met....why?

I too am at high risk (perforation due to adhesions) so I refused biopsy. I am happy with my choice. The gluten-free diet cured my migraines and my vertigo is nearly gone too. I dont need an offical Dx and if a future doctor challenged me, I would say, so what. I am healthy eating gluten-free and you cant change that.

Some say that the diet should be pretty glutened everyday for a good three months. 3 or so servings of a gluten food a day. Depending on his age he may get a false negative anyway (common in children under 6).

Here is the panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You can always try a gluten-free diet to see if you get a POS result.

1. Would DH have shown up on a routine skin biopsy or should my Dr have ordered a specific test? For DH it is important that the biopsy be done correctly. The lesion or red area should NOT be biopsied. You have to take a sample from normal healthy looking skin right next to the lesion. If your Dr. took an actual sample of the lesion/rash area, this was incorrect.

2. Would I have to start eating gluten again to be re-tested? (I don't want to as I'm alreay having some withdrawl symptoms and want to avoid the yo-yo on and off gluten again path) Right now, I have no outbreak. Yes for best accuracy.

3. Could it really just be eczema, etc and maybe just some food intolerance that I have eliminated with the gluten-free diet? Yes. It could be eczema as a result of "gluten intolerance". Or it could have been DH due to Celiac.

Either way the cure is the same = gluten-free diet.

It is up to you if you want to push for more testing and eat gluten again. It sounds like you have your answer. Congratulations!!

Everyone heals at their own speed. For many it can take over a year for full recovery. It requires patience (not my forte...LOL), but it does pay off.

Also, there might be a threshold for those foods. Where 1 piece of cheese a few times a week is fine, but cheese and/or yogurt everyday is too much for his body to handle.

That tends to happen. We challenge a food and dont have a problem, so we start eating it everyday and/or a lot of it. Then we get symptoms again.

I would say keep at it for a good year and then try again and see.

Yes, you sure could have developed it in that 3 years time. Your blood work is STRONG positive and you should request a biopsy NOW to look for damage. Either way, there are plenty of doctors who would dx you with those bloods plus your symptoms alone.

If you are still eating gluten, now is the time for biopsy. Back then you may not have had enough damage to show up in biopsy. Or they didnt take enough samples from enough different areas or the technician was not skilled enough to read your slides correctly. You have likely had Celiac all along. So as you suspect....a false negative is very likely back then. This is a common situation for many in here.

You are not born with Celiac. You can be born with the genes, but you need a trigger (gluten). So as soon as you get formula or food with gluten you CAN develop Celiac (or at any point in your life). The truth is we simply do not know why exactly people with the same genes and exposure to the same triggers do not develop the disease the same.

You should ask for GENETIC testing as well just to make it complete.

So now. Get ALL of the testing out of the way and start eating gluten-free as soon as your biopsy is done. Prepare yourself and your kitchen. Be ready.

And here is to you getting better!!

Tracy....I know exactly how you feel. From my first time having intercourse it hurt. But I thought that was normal. Then it continued to hurt EVERY TIME for 3 years. It was all I knew and I thought it was "normal". In those 3 years I never saw a doctor because even though I felt pain with it, it wasnt so bad to stop me and I thought it was how every woman felt. Till I said to a friend one day what a pain in the butt sex was. And how it hurt and I didnt see why anyone wanted to do it. Well she actually ENJOYED doing it and told me something was terribly wrong. So I finally went to a doctor. I was scared for sure. But turned out that I had abdominal adhesions from an appendectomy surgery many years before. They went in and cleaned everything up in there. I can still remember how good it felt after that procedure. Hey this DOES feel good.

So even though you do not know what you are missing, it is still worth trying. It might jut be the best thing that has every happened to you.

The very SAD thing is this: That small amount of gluten he gets is not likely to yield a POS dx, BUT it is enough to be causing continual damage (even if you see no signs of that damage, it is happening). If he is Celiac, then that bit of gluten he is getting each week is like feeding him a few tiny pellets of rat poison each week. Not trying to be harsh, it is the truth. And I am not judging you, we all make mistakes. I still make them now and again. But Celiac is a serious disease with serious consequences.

If you feel that having an OFFICIAL Dx of Celiac will force you to keep him 100% gluten-free ALL of the time, then there is benefit in doing it. But he will need to be eating a regular gluten filled diet for at least a few months and even still there are A LOT of false positives in children under 6 because the immune system is not fully developed yet. And your son already has a deficiency there.

Having Celiac genes does not Dx Celiac. But at the very least you KNOW he is "gluten intolerant" because you had a dramatic POS response to the diet.

If it was me and mine, I personally would not put my child through eating a gluten filled diet for months to get an official Dx when they were responding wonderfully to the diet. That is just me.

Only you can decide what is best for you and yours.

Either way, you do really need to keep him 100% gluten-free. You might even see more positive changes.

If I were you, I would go back to grain free and feel GREAT again!! I am grain free and have never felt better in many ways. I didnt have a weight problem (I was too skinny) but the grains just dont agree with me. They spike my blood sugar. Grains are not the "health food" that the U.S. makes them out to be. Our bodies are not designed to digest them well. We just force our bodies to do it. And you had AWESOME results before. Grain free sounds right for your body.

If the blood tests come back positive, do I really need to get an endoscopy? You dont NEED to do anything but get well. But if having an official Dx will keep you on the diet 100%, then I would say YES get the biopsy. If you dont need a piece of paper to keep you 100% gluten-free and no cheating, then you can choose to skip it.

If they come back negative should I get tested again? There are many FALSE NEGs. You could still ask for a biopsy to see if your villi are damaged. Or just do the diet and feel GOOD.

Is celiac disease a likely diagnosis, based on my symptoms? YES

Is there any benefit to having an "official" diagnosis rather than just going gluten-free? Depends on the type of person you are. Some people MUST have an official Dx or they "cheat". And if you are truly Celiac, then "cheating" causes damage and autoimmune response (you dont want that).

Is there detriment to having an official diagnosis? Could be used against you for future insurance (pre-existing condition)

Shae is very pretty. My legal name is Sharon but my family all call me Shay.

That is right. With autoimmune diseases the trigger can be in a small amount or a large amount. The result is the same....damage. So whenever you eat "even a little bit of it" you are damaging yourself if you are Celiac. You arent doing yourself any health favors by be "gluten-lite".

The only Italian food he cannot eat that has gluten is Pasta and Bread. Now I know there arent many good bread recipes or subs out there for bread. But Tinkyada pasta....couldnt tell the difference. He can stay Italian. Just sub that out.

And the 2 of you should have "dates" in the kitchen trying new gluten-free bread recipes.

Even if you dont get an official Dx, it will not hurt to try a gluten-free diet. It is healthy. And the proof would be in the eating.

Also consider the SCD (Specific Carbohydrate Diet) as it sounds like it fits you.

Wishing you well!

The thing is that your body is not able to properly digest and process fat right now, so it just goes right through you and you do not gain weight. I was this way before gluten-free. I have put on (as of this morning) 8 pounds since I went gluten-free. I have curves again.

Mostly be patient with yourself. Learn the diet. Make sure you are 100% gluten-free (including toothpaste, lip gloss/stick, facial creams, etc., get rid of old scratched teflon pans, old cutting boards and old wooden spoons). And let your body heal. It will then start processing fat again and you will gain.

You can also try a good digestive enzyme with Lipase which will help your body break the fat into fatty acids for better use.

You will also need adequate protein to gain the weight you need. IMO animal protein gets this done most efficiently. If you are vegetarian, eggs will help here.

Wishing you well!

I agree with everyone here and have nothing more to add, but support for getting the proper testing by challenging gluten (for 3 months would be good). Eat plenty of it and then get tested.

That is right. It is totally up to you.

For me, even 2 weeks of vertigo and migraines is not worth it. I could care less about an official dx. I DID have the gene tests done though. I wanted to know if I even have Celiac genes. I do not (according to US standards). I have 2 gluten sensitivity genes. This is enough for me. Positive response to the diet plus 2 defective genes. Im good.

But you have to decide for yourself what will make you most comfortable.

Mine were very slightly elevated too before gluten-free. But went back down. I cannot pin point any symptom improvement though.

Chocolate and tea have caffeine also...enough to cause this. Google Evening Primrose Oil. It really got rid of my breast pain (years ago). I still take it.

Mold would be my guess.