diagnosed, no symptoms.. shocked!!!!!

[artsunshine]

Hi all, i am obviously new there...

First of all, english is not my native language, so sorry for mistakes. 

I went to a doctor because i had terrible bone pain and get really scared it is cancer! Blood test came back, everything seems ok, just anemia. Doctor sent me to test for celiac disease and i was thinking why? I never ever had a problem with food, my friends always joked i have an iron stomack :D, i could eat basically everything, never had food poisoning etc. I went to local pharmacy and obtain home self kit for testing celiac disease. (i am waiting my lab tests now). AND SHOCK! tTg was positive. I couldnt believe it!!! I  bought another one haha  ! The same. 

Was crying 3 days now. I will get my results (ttg and EMA) in one week and I am really sad. I know there are no real chances i dont have celiac. I just dont get it. I read everything on the internet and now i know that bone pain is quite common. I am 25 years old. Now, i have several questions, and i would be SO grateful if anyone can help me...

- if i have bone pain, does that mean i have osteoporosis? Will my bone get back to normal again? How about pain?

- after anemia and one month of iron syrup i totally recover ( of course that was prior diagnosis) does that mean anything? Do i have early stage of celiac? Or is that common? Other vitamines are OK, except D vitamin.

- can i eat gluten free pizza at restaurant? How strict do i have to be, if i dont have symptoms? 

- do i need some other tests? I read that sometimes you can get cancer, sometimes you can get diabetes because of celiac. How often is that :(?

 

THANK YOU SO MUCH!

[GFinDC]

Hi artsunshine,

We were all new at one tine.

You probably don't need to worry about cancer from celiac damage.  That is very rare.

I don't know if you had an endoscopy yet? Usually the doctor will want an endoscopy after the blood tests are positive.  You should keep eating gluten until all the celiac testing is completed.

There is a higher chance of getting some associated autoimmune (AI) conditions for people with celiac disease.  I think it is considered about a 10% higher chance than usual.  So not an automatic thing.  The chance of getting an additional AI condition seems to be related to how long as person with celiac disease is untreated (eating gluten).

Celiac disease makes it hard to absorb vitamins and minerals.  So we can be come deficient in them.  After you go gluten-free your gut should start healing.  In 6 months or so you should be able to absorb the vitamins and minerals better.  So your bone pain will probably go away if it is caused by a deficiency.

Welcome to the forum !

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What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

 

[Posterboy]

artsunshine,

Let me add to what GFinDC said.

The cancer concern usually is only for those who continue to eat gluten.

You will find there will be good days and bad days when you are cross contaminated but you will learn quickly in which food "hidden gluten" lays.

You will become an expert label reader.  Fortunately now it easier than it once was now that things have a gluten free label.

I actually considered it a blessing.  Most autoimmune disorders we don't know the "trigger" for Celac you do.

I would joke at least gluten/bread was something I didn't really enjoy like tomatoes or cheese etc.

If you know what to avoid you can do it. 

A lot of people become more sensitive to gluten after about 6 months to a year.  At  a year things I had eaten though I didn't realize it at the time had gluten like meats so I went to whole meat hot dogs. Flours are included to extend the product and it is cheaper than meat so you get thinks like modified food starch in them.

You find there will be many learning experiences along the way.

but this board will be here to answer any questions you might have.

There is a poster on this board who was told he had IBS and 10 or 12 years later he has now found he has or really (had) or now does have celiac disease.

You have an early start on getting better because you got your diagnosis so soon. Education/awareness is a wonderful thing.

It is wonderful time to be a celiac but count yourself lucky.. . . . you can't control cancer by going gluten free but you can a celiac diagnosis.

posterboy,

 

[ravenwoodglass]

Welcome to the board. Your bone pain should resolve and it doesn't mean you have any bone loss at this point.  My bone pain was horrific and I had it for a long time and it did resolve on the diet. It took a while but I had it off and on since childhood and wasn't diagnosed until my 40's. Your's may resove fairly quickly hopefully.

Do be sure to continue to eat gluten until you know whether or not they are going to want an endoscopy. Being in another country I don't know if they always endo if bloodwork is positive where you are. Check with your doctor on that.

Many times younger people heal fairly quickly and I hope that is the case for you. Do be sure to read the Newbie thread at the top of the coping section as it will have a lot of good info for you. Ask any questions you need to and once you are firmly diagnosed do alert other family members that they should be tested also.

[cyclinglady]

Like you, I was shocked that I had celiac disease at the age of 51.  Anemia was my only symptom.  I also had some bone pain due to osteoporosis.  This resolved on the gluten-free diet and exercise.  My bone scans show that i am holding steady.  Good news for a post menopausal woman.  I would expect much better results from a you ger person.  

Eating that pizza?  I would avoid taking chances eatin out until you see results and master the gluten-free diet unless the  restaurant is 100% gluten free.  

Be sure to get follow-up care (antibodies testing), iron panels, etc.  This will help you determine if you are really gluten free.  

[GFinDC]

Hi again artsunshine,

Not having symptoms doesn't mean your body is not being damaged.  Some people have silent celiac disease and have no digestive symptoms.  But you still have to be careful to avoid all gluten in your diet.  The damage in celiac disease is from the immune system and also malabsorption of nutrients.  The malabsorption is probably what caused your iron deficiency.  Malabsorption tends to get worse, not better, if you are still eating gluten.  Each time you get hit with a little gluten the immune reaction kicks off and doesn't stop for weeks to months.  It's not like food poisoning where you get over it in a few days.

It can take 6 months to  year or more to heal your gut.  Sometimes people don't completely heal even in that time.  So staying strictly gluten-free is important to slow the immune system attack and allow healing to occur.

[artsunshine]

i am shaking as i just seen this article:

"Researchers at Karolinska Institutet, Orebro University, and Columbia University College of Physicians and Surgeons worked together and explored the neuropathy/celiac relationship by evaluating 28,232 individuals with biopsy-verified celiac disease and 39,472 matched controls. Their findings were reported in the journal JAMA Neurology.

Here’s what the authors found:

• Nearly 200 individuals with celiac disease were eventually diagnosed with neuropathy (0.7%) compared with 359 patients in the control group (0.3%)
• Overall, it was estimated that people with celiac disease were about 2.5 times more likely to be diagnosed with neuropathy than individuals who did not have the disease."

The thing is that i am so scared right now.  Along my horrible bone pain i also experience cca once per month muscle spasms in my legs at night time. It hurts so much, but in the morning everything is OK. I am really worried if this is a first sign of Multiplpe Sclerosis. Anyone else experiencing this? Thank you so much.... I can barely breathe, so scared. 

[cyclinglady]

You are going to be okay!  You are probably showing signs of malnutrition. 

The bone pain is going to take a while to heal on a gluten free diet.  In the meantime, get something to sleep on to cushion you.  I felt the bone pain most when trying to sleep.  

Leg cramps, again, you could be vitamin deficient, especially since you are anemic.  Ask your doctor to run vitamin tests.  Drink more water.

Neuropathies?  Those often go away on a gluten free diet too, but take the longest to heal.  Cancer is really, really rare.  

Did you get an appointment for an endoscopy?  Or for further testing?

Reading about celiac disease is good, but it sounds like you are researching too much.  

 

 

[GFinDC]

Hi artsunshine,

I am not sure what cca is?  Actually, I don't have a clue!  Regarding your muscles spasms, have you had your blood sugar checked?  Just a good thing to do as a basic test.  You could try some magnesium for your muscles spasms, it might help.

You could also try taking some B-12 for nerve health.  B-12 is one of those vitamins our nerves need to function correctly.

Remember some of us other celiacs on the forum have been here for years.  In some cases, we started out pretty darn sick but then got better on the gluten-free diet.  We are even able to type replies to questions now!   So things don't always go from bad to worse with celiac disease.  They often go from bad to better in fact.  As long as we follow a good diet that is also gluten-free.

When you do go gluten-free, it is good to really simplify your diet for a few months.  Eat mostly meats, veggies, nuts, eggs and fruit.  Eat very little processed food and don't eat at restaurants either.  Don't trust anyone else's cooking, but eat foods you cook at home.  Often people have to give up dairy for a while too.  You will have to change your diet, but that should end up being a good thing.  You would end up eating better quality food and since you make it yourself you will know what is in the food.  That is all good stuff to happen.

[artsunshine]

thank you so much for your kind replies. My doctor ordered many blood tests and everything was Ok, except iron and vitamin D. Blood sugar, kalium, natrium, calcium... everything OK. 

and sorry, with muscle spasms and word CCA in mean i get muscle spasms once or twice per month. 

I really hope it is Not Multiple sclerosis ( i know 10% of MS patients also has Celiac) I will try not to panic. But i ve been through a lot last months (i guess many of celiac patients were also before they were diagnosed) I am so sorry for bothering you....i really am. 

[cyclinglady]

If this will make you feel better, my mother-in-law presented with eye issues some 15 years before it affected her walking, etc and she had MS.  With a positive bio-card for celiac disease, it is most likely Celiac disease.  All should resolve on a gluten free diet.  Follow-up with your doctor concerning the celiac blood tests he hopefully ordered to confirm your drug store test.  

 

[Posterboy]

artsunshine,

We are glad to help if we can.

I have had your legs cramps before. 

Taking Magnesium CITRATE 200mg 3 to 4 a day (at least 2 hours between doses) will get rid of most people's leg cramps.

posterboy,

 

 

 

[GFinDC]

You are not bothering us yet artsunshine!   We are here because we like to help people.  And some of us have been through something at least somewhat similar.  We may not have all the answers, but we may have some!

[frieze]

not knowing whether you are male/female, the iron def may be do to routine blood loss?  iron def, when severe enough can lead to muscle cramping, as well as the mag. def.  if you supplement Vitman D, up your magnesium even more.

[artsunshine]

Hi, i just thought to stop here and let you know what happened arter my post. My ttg is >200!!!! What does that mean? That is my vili flat as linoleum? Do i have greater risk for cancer? I might sound like i am panic, but i am not, just curious. I have seen several topic about rate ttg and rarely seen more than 200! I am afraid if my vili will grow back with this result! Did anyone have such high result and got totally cured after gluten free diet? Thank you so much!

[Gemini]

5 hours ago, artsunshine said:

Hi, i just thought to stop here and let you know what happened arter my post. My ttg is >200!!!! What does that mean? That is my vili flat as linoleum? Do i have greater risk for cancer? I might sound like i am panic, but i am not, just curious. I have seen several topic about rate ttg and rarely seen more than 200! I am afraid if my vili will grow back with this result! Did anyone have such high result and got totally cured after gluten free diet? Thank you so much!

Take a deep breath.....you will be fine! 

What the test means is that your villi are probably as flat as linoleum.  That is very funny by the way and I will have to remember that one!    Now....I am not laughing at the fact that your villi are damaged but as someone else who had sky high antibodies, I can assure you that, with time and a strict gluten-free diet, you will grow your little missing villi back. Really, I would not lie to you!  I was 45 at the time of diagnosis so if this older lady can completely recover, so can you.  It has been almost 12 years for me and I feel better than I did in my 30's. 

Below are links to 2 books that will give you a wealth of information on Celiac Disease.  Please do not read anything written by celebrities.  Many people make that mistake.  Learn the diet well, ask any questions here on the forum because, most of the time, we can answer anything here.

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As an after thought......having a really high tTg does not always mean that there will be a lot of intestinal damage. It's funny how it works.  I had extremely high tTg and failed the whole panel so I did not have the biopsy.  It was apparent that I had no villi left at all because I was losing 1 pound per day at diagnosis.  It was bad.  But you say you have no symptoms or weight loss so maybe the damage isn't horrible.  Whatever it is....you have Celiac.  You were anemic and have very high tTg. The good news is that you will be fine but don't expect back to normal on testing for about a year. It may happen sooner but have patience!