ShayFL

There are many FALSE NEG with bloodwork. It may be that is your case. The ability to absorb iron varies from person to person and even if you were/are Celiac and supplementing heavily with iron, you could have made some progress. But once you stopped it eventually went back to where it was.

When was the last time you had your Iron/Ferritin tested? How bout your Folic Acid and B12? The anemias are interrelated and they should all be tested.

Celiac is a tricky thing. Some have it but test NEG on everything, but respond dramatically to gluten-free diet. Some of those people have the genes. Some dont have the genes but are POS blood and POS biopsy.

If a person is Celiac but not eating a lot of gluten at the time of testing they can get a FALSE NEG.

You really should have a biopsy done to look for damage and help with th dx of Celiac.

And to test again make sure you are eating LOTS of gluten (wheat, rye and barley) for a good 3 months before your tests for best accuracy. Some say 4 months is best.

Wishing you well!

Have you had your Thyroid tested? Iron and Ferritin? B12?

Are you Celiac or Gluten Intolerant? If so are you 100% gluten free?

Please tell us more about yourself so we can help you.

NOTE: I was severely hypothyroid but thin and loose stools. That was thanks to GLUTEN. So those symptoms arent always the case. My thinness and loose BM's were why I couldnt get dx properly for nearly 12 years.

How long have you been "full force" gluten eating? I hope for at least 2 - 3 months and some say 4. Otherwise there is a very HIGH probability that you will get a FALSE NEGATIVE. Which is bad. Because if it is FALSE and they say you do not have Celiac (when you really do) and you continue to eat gluten (with no symptoms) you will still be damaging your body. This damage can show up later with the development of another autoimmune disease or lymphoma.

Not telling you this to scare you. But dont want you to waste your time with a biopsy that may not be accurate.

I know I would want to know.

As for the procedure....you will be out and not feel a thing.

The bowels are a many complex thing indeed. Maybe you are getting rid of old impacted stuff. I would just take it as a good sign since they are firm and regular.

This is exactly why I am now considering going BACK into nutritional consulting practice. I know soooo much more now than I did then and it didnt come from reading school books. I believe I can actually help some "hopeless" cases now.

I go in January back to my Doc who is a Holistic M.D. Last time I was there she mentioned me coming to work for her. I think I will take her up on it. I am an Artist too and since Art is a luxury item and sales have dropped, this is a great time for me to get back into nutrition anyway.

Wishing you well!!

Good advice from Raven. And get your Thyroid, Ferritin, Vit D checked while you are at it. There are so many things that can need to be addressed with Celiac.

My Mom's thyroid panel came back "normal" with NO antibodies just a few weeks before they removed her thyroid (after a scan showed problems). She had SEVERE Hashi's and thyroid cancer. The doctor said the reason she had NEG antibodies is that there wasnt much tissue left for her body to attack and she had very low total IgA. The blood tests dont always tell the whole story. My Mom could very likely be dead if they had gone by blood alone.

Get an ultrasound of your thyroid too.

My daughter liked Tinkyada BETTER. So you just have to try it and see.

I really hope for your sake that it IS Celiac (a highly treatable disease) and you can have perfect health after you heal. Of course, I dont want you to have a disease, but if everything comes back NEG, you will still have your worries, fears and dread that you will end up like your DAD. No diagnosis and poor health till the end. THAT is what I dont want for you. So I hope this gives you the answer and you can go gluten-free and start healing.

I hope that makes sense.

It can be. The reason the dairy is such a problem could be because it is the very tips of the villi that digest milk/casein. So if the damage has only progressed to that upper tip, this is why the reaction to milk. Hopefully he doesnt have completely flattened villi. He will heal a lot faster once gluten-free.

Keep him on gluten until all tests are done.

We see a lot of similarities among Celiacs/Gluten Intolerant individuals.

Hashimotos/Thyroid Disease

Low Vit D

Low Iron/Ferritin

Low B12

And others.......

Yes his symptoms could be Celiac. And MANY celiacs also cannot tolerate dairy. This is common.

Did they do a complete Celiac blood panel on him? Are they going to do an endoscopy to Dx Celiac?

You wont know anything until you get these tests done.

Wondering if Friday is "pizza night" or anything like that? Why so sick after Friday?

Hope you get answers soon and he can start getting better.

Unfortunately you cannot make someone get medical care. They have to want it for themselves. And if you interfere you may get alienated. Best to let him take care of his own health.

I know it is so hard with children. All that poop might actually be a good sign believe it or not. His body is detoxing and cleaning out from the gluten.

Simple foods are best for now. Some things that children like are things like baked sweet potatoes with cinnamon and brown sugar. Mashed potatoes and homemade french fries (bake them in the oven, spray with oil, sprinkle with salt 350 until golden brown).

Van's Waffles are good.

You can get gluten free oats: Bobs makes them and here is another:

Open Original Shared Link

Try Quinoa flakes with brown sugar and cinnamon.

Fruit smoothies are good.

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/catalog/product_info...products_id=597

***And yes...that frosting was a NO NO. You will need to work with his teachers so that you can always prepare him a yummy to take on birthdays and such so he wont be left out.

It gets easier. We promise.

Getting your thyroid levels up can only help. Since you have trouble with digestion, beg beg beg your doctor for Armour thyroid because you can put it under your tongue sublingually so it dissolves and it goes right in. It tastes kind of sweet.

Yes, if it is Celiac you have caught it early and the gluten-free diet can turn her around quickly.

Just be aware that if she responds POS to the diet, a lot of doctors will then want to test, BUT because of the diet the test will come back NEG.

So if you want an official Dx she MUST continue to eat gluten and get a full celiac panel and a scope.

Oh Im pulling for you.

My Sister quit in March right after her breast cancer Dx. She had been smoking for 30 years since she was 13!!!! She did use Chantex (sp) and she said it really helped her a lot.

Good luck!!

I am certain he has a gluten intolerance as we've had him off gluten for a few months now.

I would be shocked if you could get a POS now. He has been gluten-free too long. If it were me and mine, I wouldnt go through the Celiac tests. Just me. You have to do what feels right for you and yours.

The periodic IBS could be due to CC. It happens. Even when you are so very careful. Manufacturers change formulations, toothpaste, lotions, shampoo, dog food. CC can show up in the least expected places.

Next time try "double baking" them purple. Let them cool and then put in the oven on 350 for 5 - 10 minutes to make them crisp. This worked for a cracker recipe I tried once when they didnt get as crisp as I like.

Yes. It is a GENETIC disease. Once you are Dx (which you are) then all of your immediate family should be tested (parents, siblings and children).

There is not necessarily any direct level of damage based on severity of the lab report.

The good news is that now that you know, you can go gluten-free (after all tests are done) and get well.

You may be crazy. But the truth is that we just do not know.

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!