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I Need Help

Kimeran

By Kimeran
in Coping with Celiac Disease

Recommended Posts

Kimeran Newbie
Kimeran
Posted

Hello, I am new here and I was diagnosed with CELIAC Disease about 2 months or so ago.

The Dr. ran a blood test and I came back positive and then proceeded to do the endoscope that was already scheduled which showed that all of my digestive track to be swollen. Therefore, I immediately stopped eating wheat and anything with gluten and I am very safe when I go out to eat.

However, when we ran the blood test again 2 weeks after the endoscope I was negative for celiac but I proved positive for the genetic mutation. The doctor said that that doesnt mean I dont have celiac disease but that it is just very odd that I no longer have the antibodies already when it takes most 6 months before they fully disapear. Anyone else experience this?

Furthermore, I am still having some stomach problems. I noticed that when I dont take my thyroid medication that I seem to do better and I think the doctor I had before was crap and didnt even want to try and find anything wrong with me. Therefore, I am going to get tested again to see if that could be a problem tomorrow.

Once again though, I am having stomach pains again and I know that I have not consumed gluten and have not taken my thyroid pill today. However, I have eaten alot of dairy as of late I guess as I had cream in my coffee this morning, ice cream yesturday afternoon cause it was a hot day, and my fiancee put sour cream in the soup we had last night alont with left over pizza.

Is it common for celiacs to also have a hard time with dairy?

My doctor told me that if I continue to have problems that he wanted to start looking for cancer. WHich scares me. However, I was doign so much better for a long time before all this started up again. Before I was diagnosed and I was still eating gluten I was on the porcelean throne about 9-10 times a day and when I went gluten free I was down to 3 and if it was more it was because I was being paranoid and just had to make sure I didnt have to go as I was used to going to much.

can anyone help me? I dont know what I should be looking at.

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kitgordon Explorer
kitgordon
Posted

It is quite common for celiacs to be unable to tolerate dairy. I suppose the thyroid medication could upset your stomach - almost any medicine can. Are you sure the thyroid medication is gluten-free? You also could still just be having stomach pains after only 2 months gluten free. I hope it is not cancer - does your doctor say why he suspects that?

cassP Contributor
cassP
Posted

OMG YES- Very very common for us to have lactose intolerance &/or casein sensitivity. its possible for it to only be temporary too tho-

you should eliminate dairy for a little while- so you're body can heal.... and maybe try to add it back in later.

and dont freak out about cancer- its good to get a good check up and maybe even colonoscopy NOW- and get a clean bill of health- you'll feel better. i got a colonoscopy- and now i dont have to worry that i might have cancer.

Monklady123 Collaborator
Monklady123
Posted

Definitely we can have problems with dairy. Lactose specifically. The way someone explained it to me is that the part that digests -- or breaks down -- the lactose is on the tips of the little villi things in our intestines. But the villi are what is damaged by the gluten. So if you have a lot of damage you can't digest lactose. Often you'll be able to go back to it after your intestines heal and the villi grow back.

Now if it's the actual dairy protein then that's a different story. But for now I'd stop all dairy (be sure to take a gluten-free calcium supplement -- ask your doctor). THen you can slowly introduce it back. I'd begin with yogurt and hard cheese, and increase from there.

I stopped all dairy except for yogurt and feel SO much better.

Marilyn R Community Regular
Marilyn R
Posted

Thyroid problems? Soy could be the culprit vs. dairy, or you could be having a problem with all three. It took me over a month gluten-free to figure out that I couldn't tolerate soy. I wasn't eating out at all, was very strict at home, eliminated dairy, and I kept telling my doctor that my calcium supplement was making me sick. He told me I shouldn't get D from calcium, that it should make me constipated. "Calcium can't make you sick." And I had a high calcium level on my labs even though I wasn't taking as much calcium supplement as my endo and gastro prescribed, even though I have osteopenia.

There was soy in my gluten-free calcium tabs! (But I had to try soy yoghurt and a gluten-free soy based mayo before I realized that soy is a bad boy, at least for me.) Don't know if soy is your "bad boy" or not, but if you search the forum you'll find some very good info from previous posts.

I wish you the vesy best...good luck. :)

Skylark Collaborator
Skylark
Posted

It's not unheard of for a low level of celiac antibodies to go away after ten weeks. I would trust the test from when you were on a full gluten diet, especially since gluten gives you symptoms.

Make sure your thyroid medicine is gluten-free. That may be why you don't tolerate it. It's also possible that you're not as hypothyroid off gluten. And yes it's really common for celiacs to have trouble with dairy. I went completely gluten, soy, and dairy free for a while to heal. After a year or so I was able to eat dairy and soy again. Don't fret about cancer yet. It sounds like you are celiac and still healing.

Kimeran Newbie
Kimeran
Posted
  • Author

OMG YES- Very very common for us to have lactose intolerance &/or casein sensitivity. its possible for it to only be temporary too tho-

you should eliminate dairy for a little while- so you're body can heal.... and maybe try to add it back in later.

and dont freak out about cancer- its good to get a good check up and maybe even colonoscopy NOW- and get a clean bill of health- you'll feel better. i got a colonoscopy- and now i dont have to worry that i might have cancer.

Ok, I am going to make sure and take lactaid when I eat dairy to see if there is any improvement there.

My doctor said that if I knew I was gluten free and still had problems that he wanted to start looking for limfomic(sp-i know its wrong) cancer.

Before they performed an endoscope that looked at everything except the colon but I cannot do that at the moment as I am getting married next week and going to italy for my honeymoon and so I need to get this fixed ASAP

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cassP Contributor
cassP
Posted

Ok, I am going to make sure and take lactaid when I eat dairy to see if there is any improvement there.

My doctor said that if I knew I was gluten free and still had problems that he wanted to start looking for limfomic(sp-i know its wrong) cancer.

Before they performed an endoscope that looked at everything except the colon but I cannot do that at the moment as I am getting married next week and going to italy for my honeymoon and so I need to get this fixed ASAP

you're Celiac, and you're going to ITALY for your honeymoon????? omg, lol...

ok, so the bad news is- is that you cant eat any yummy pasta or pizza

the good news->is that they know MUCH MORE about Celiac in Italy then they do here... they actually test every baby's genes, and then follow up with other tests- so im sure you can tell restaurants that you're celiac, and they can have alternatives... at least thats what im guessing.

i would do your best (on top of NO gluten) to avoid all dairy... and just take a lactaid with your dairy on your honeymoon for those times you just cant pass up the dairy.

and then, just get back to your doc for any additional tests after your honeymoon. have fun

i-geek Rookie
i-geek
Posted

On honeymooning in Italy:

The Gluten-Free Girl and the Chef (bloggers who just published a gluten-free cookbook) went to Italy for their honeymoon. This was well after her diagnosis of celiac disease. Here's one of her posts on eating while she was there: Open Original Shared Link. I really, really want to go there. :) Have a fabulous time, Kimeran.

cassP Contributor
cassP
Posted

On honeymooning in Italy:

The Gluten-Free Girl and the Chef (bloggers who just published a gluten-free cookbook) went to Italy for their honeymoon. This was well after her diagnosis of celiac disease. Here's one of her posts on eating while she was there: Open Original Shared Link. I really, really want to go there. :) Have a fabulous time, Kimeran.

omg! thankyou for that link- i almost started crying- seriously- at the welcoming experience that blogger had in italy!! that's how it should be everywhere

i-geek Rookie
i-geek
Posted

I know, right? With a few exceptions, it's the opposite of my recent experience in Japan. There I was escorted out of one restaurant by management, refused service at another one, and in other cases served things with shouyu (soy sauce brewed with wheat) after I had requested no shouyu. The food in that country is a minefield for celiacs. Barley tea served with meals, wheat starch in the rice, soy sauce in everything. I suspect that's why I'm still sick two weeks after coming home (and I avoided all things that were obviously glutened). At least my plane experiences were better: American Airlines is very careful with special meals (we got our trays and snacks first, all clearly labeled with our names and seat numbers) and most of my food was better than that on my husband's standard trays.

My best friend went to Italy with her boyfriend's family last Christmas. She has a pretty severe dairy allergy and found the restaurants to be quite accomodating. She had an amazing time. Argh, I so want to go there!

tehjrow Rookie
tehjrow
Posted

You should stay off gluten and dairy. I know people just say that and don't say anything else. Well, think about this.

If you stop eating gluten and dairy you could be one of those normal people you dream about.

That is the sentence I currently live by.

Kimeran Newbie
Kimeran
Posted
  • Author

That makes me feel alot better knowing that Italy is very accomadating for celiacs. It is a cruise I am on for the majority of the trip but most of the stops are in italy with a few in greece, turkey, and egypt.

I have decided to try and avoid dairy completely for the time being to see how that helps. I go to the doctor today to check on the thyroid as I have completely stopped taking it as I always felt bad the days I did. This added to the fact that the doctor I was going to before didnt seem to give a hoot that I was having so much stomach trouble and I wonder if it was just a simple solution from him. I went to the same doctor for 3 years complaining about stomach problems and the last straw was when he told me that I should start sticking pills up my rear for hemroids when I was complaining about my stomach.

The new doctor is very good and immediately referred me to a specialist in town who diagnosed me right away and tested to follow up on it.

Lets cross our fingers and hope that dairy is the culprit at the moment as I do tend to eat alot of cheese and cereal in the morning(gluten free chex).

diane64 Apprentice
diane64
Posted

Hello, I am new here and I was diagnosed with CELIAC Disease about 2 months or so ago.

The Dr. ran a blood test and I came back positive and then proceeded to do the endoscope that was already scheduled which showed that all of my digestive track to be swollen. Therefore, I immediately stopped eating wheat and anything with gluten and I am very safe when I go out to eat.

However, when we ran the blood test again 2 weeks after the endoscope I was negative for celiac but I proved positive for the genetic mutation. The doctor said that that doesnt mean I dont have celiac disease but that it is just very odd that I no longer have the antibodies already when it takes most 6 months before they fully disapear. Anyone else experience this?

Furthermore, I am still having some stomach problems. I noticed that when I dont take my thyroid medication that I seem to do better and I think the doctor I had before was crap and didnt even want to try and find anything wrong with me. Therefore, I am going to get tested again to see if that could be a problem tomorrow.

Once again though, I am having stomach pains again and I know that I have not consumed gluten and have not taken my thyroid pill today. However, I have eaten alot of dairy as of late I guess as I had cream in my coffee this morning, ice cream yesturday afternoon cause it was a hot day, and my fiancee put sour cream in the soup we had last night alont with left over pizza.

Is it common for celiacs to also have a hard time with dairy?

My doctor told me that if I continue to have problems that he wanted to start looking for cancer. WHich scares me. However, I was doign so much better for a long time before all this started up again. Before I was diagnosed and I was still eating gluten I was on the porcelean throne about 9-10 times a day and when I went gluten free I was down to 3 and if it was more it was because I was being paranoid and just had to make sure I didnt have to go as I was used to going to much.

can anyone help me? I dont know what I should be looking at.

diane64 Apprentice
diane64
Posted

Hello, I am new here and I was diagnosed with CELIAC Disease about 2 months or so ago.

The Dr. ran a blood test and I came back positive and then proceeded to do the endoscope that was already scheduled which showed that all of my digestive track to be swollen. Therefore, I immediately stopped eating wheat and anything with gluten and I am very safe when I go out to eat.

However, when we ran the blood test again 2 weeks after the endoscope I was negative for celiac but I proved positive for the genetic mutation. The doctor said that that doesnt mean I dont have celiac disease but that it is just very odd that I no longer have the antibodies already when it takes most 6 months before they fully disapear. Anyone else experience this?

Furthermore, I am still having some stomach problems. I noticed that when I dont take my thyroid medication that I seem to do better and I think the doctor I had before was crap and didnt even want to try and find anything wrong with me. Therefore, I am going to get tested again to see if that could be a problem tomorrow.

Once again though, I am having stomach pains again and I know that I have not consumed gluten and have not taken my thyroid pill today. However, I have eaten alot of dairy as of late I guess as I had cream in my coffee this morning, ice cream yesturday afternoon cause it was a hot day, and my fiancee put sour cream in the soup we had last night alont with left over pizza.

Is it common for celiacs to also have a hard time with dairy?

My doctor told me that if I continue to have problems that he wanted to start looking for cancer. WHich scares me. However, I was doign so much better for a long time before all this started up again. Before I was diagnosed and I was still eating gluten I was on the porcelean throne about 9-10 times a day and when I went gluten free I was down to 3 and if it was more it was because I was being paranoid and just had to make sure I didnt have to go as I was used to going to much.

can anyone help me? I dont know what I should be looking at.

diane64 Apprentice
diane64
Posted

My antibodies plummeted after no gluten for just 3 weeks...

Hello, I am new here and I was diagnosed with CELIAC Disease about 2 months or so ago.

The Dr. ran a blood test and I came back positive and then proceeded to do the endoscope that was already scheduled which showed that all of my digestive track to be swollen. Therefore, I immediately stopped eating wheat and anything with gluten and I am very safe when I go out to eat.

However, when we ran the blood test again 2 weeks after the endoscope I was negative for celiac but I proved positive for the genetic mutation. The doctor said that that doesnt mean I dont have celiac disease but that it is just very odd that I no longer have the antibodies already when it takes most 6 months before they fully disapear. Anyone else experience this?

Furthermore, I am still having some stomach problems. I noticed that when I dont take my thyroid medication that I seem to do better and I think the doctor I had before was crap and didnt even want to try and find anything wrong with me. Therefore, I am going to get tested again to see if that could be a problem tomorrow.

Once again though, I am having stomach pains again and I know that I have not consumed gluten and have not taken my thyroid pill today. However, I have eaten alot of dairy as of late I guess as I had cream in my coffee this morning, ice cream yesturday afternoon cause it was a hot day, and my fiancee put sour cream in the soup we had last night alont with left over pizza.

Is it common for celiacs to also have a hard time with dairy?

My doctor told me that if I continue to have problems that he wanted to start looking for cancer. WHich scares me. However, I was doign so much better for a long time before all this started up again. Before I was diagnosed and I was still eating gluten I was on the porcelean throne about 9-10 times a day and when I went gluten free I was down to 3 and if it was more it was because I was being paranoid and just had to make sure I didnt have to go as I was used to going to much.

can anyone help me? I dont know what I should be looking at.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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