Don't Even Know If I Am Celiac...

[chocolatebunny]

Hi everyone,

I have been following the gluten free diet for 8 months or so, but I don't really know if I have celiac disease. I got put on the diet by a doctor who I went to because I had lost my menstrual cycle and also had thyroid disease symptoms. She tested my vitamin levels and found that I was profoundly decifient in some vitamins. Some of these vitamins such as vitamin D, I had been taking supplements of an adequate amount so I wasn't absobing them. She said that I was likely losing the vitamins through celiac disease even though the test came out negative (she said that for alot of people it comes out negative when they have the disease). She put me on the gluten free diet and upped my vitamins. I did feel better and my menstrual cycle, though still irregular came back. Amazingly, my thyroid is now perfect. My TSH went from over 6 to 1.5. I am not cold all the time anymore. I am not sure though if this is from the gluten free diet or from the vitamins. What makes me question if the gluten free diet is doing anything even more is that in the summer I lowered my vitamin intake and my symptoms started returning even though I was eating gluten free. I don't have many of the typical celiac disease symptoms at all such as stomach or digestive problems. My mom, however, went to the same doctor as I went to and her test for celiac disease was also negative, but she really gets sick and gets sharp stomach pains when she eats gluten. One thing since I went gluten free is I gained 15 lbs, which I've read is common in people with celiac who start following a proper diet. I was very thin before and could not keep on weight. This also might have been my age as I am only 16 and maybe gained weight naturally, but it was very sudden. It is hard though to follow the gluten free diet when I don't know for sure if I even have to. It is unmotivating because if I eat gluten I don't get sick or anything. I also go and do things with my friends and my diet is restricted, and it's hard to restrict for possibly no reason. It's almost embarrasing sometimes to keep saying I'm allergic to gluten when I don't know if I really am. Also, I'd really like to be vegetarian (and I used to be) but with the gluten free diet it is hard to restrict more. Have any of you ever been in a similar position, and if so how do you find out if you really need to do the diet.

Thank you!

~Liz

[RiceGuy]

Well, seems to me that if you eat gluten again and started losing weight, that could be one indicator for you. The thing is, you may be at a very early stage of damage, so symptoms might not appear much if at all from eating gluten. I didn't recognize my symptoms until a high amount of damage had already occurred. I'd really recommend proceeding cautiously to avoid doing yourself harm. Don't rely on symptoms being so obvious that they can't be mistaken for anything else. For years doctors kept saying there was nothing wrong with me, or it was in my head, or I had a viral infection, or I was faking to get attention or to stay home from school.

It may also take awhile of eating gluten again before you see any changes. There are tests that may or may not give you a reliable indication. I never sought an "official" diagnosis. Not only did I give up on the medical profession long ago, but the gluten-free diet works for me, so I don't care what any amount of testing would suggest. That's my own opinion and choice of course. You'll have to weigh the risks and benefits, and decide for yourself. Sure the diet is more difficult to have confidence in enough to follow when the symptoms don't show much or at all. It could be tough to figure out in your case. One additional thing to look into might be if the gluten-free diet has eliminated or added anything else that might explain the weight gain. You may be allergic to something other than or in addition to gluten.

I'm sorry I don't have a more definitive answer for you. Perhaps other members can relate to your situation better than I, and provide a clearer idea what direction you can take.

[Creative-Soul]

Hi everyone,

I have been following the gluten free diet for 8 months or so, but I don't really know if I have celiac disease. I got put on the diet by a doctor ...

She tested my vitamin levels and found that I was profoundly decifient in some vitamins. Some of these vitamins such as vitamin D, I had been taking supplements of an adequate amount so I wasn't absobing them. She said that I was likely losing the vitamins through celiac disease even though the test came out negative (she said that for alot of people it comes out negative when they have the disease). She put me on the gluten free diet and upped my vitamins...

What makes me question if the gluten free diet is doing anything even more is that in the summer I lowered my vitamin intake and my symptoms started returning even though I was eating gluten free. I don't have many of the typical celiac disease symptoms at all such as stomach or digestive problems.

Also, I'd really like to be vegetarian (and I used to be) but with the gluten free diet it is hard to restrict more. Have any of you ever been in a similar position, and if so how do you find out if you really need to do the diet.

Thank you!

~Liz

Hi, Liz!

Okay..I'm going to take a stab at this...I'm sure there'll be others who'll pitch in and correct me if I'm wrong, but...

Many who have Celiac also have malabsorption issues (especially when first diagnosed, which have to be addressed in order for the body to begin to truly heal) which is why your Doctor started you on the vitamin regimen that she did. The gluten-free diet serves to stop the ingestion of the offender, giving your system an opportunity to heal AND after not being able to absorb nutrition properly, you have to play 'catch-up' with all the vitamins you've been missing...both work together.

You've seen great results from the diet so far, but it can take quite a while longer for your system to heal totally - that's why your symptoms may have returned when you lowered your Vits...you have to give it more time

I was diagnosed solely by dietary response by my doctor; my symptoms where mainly neuorological but the GI reactions showed up after going Gluten free... and they're pretty bad!!! If I eat Gluten, I want to DIE I am in so much pain...also my depression/panic attacks etc come raging back; no more for me!!! I can understand how difficult it must be for you not to experience the "typical" reactions most Celiacs/ Gluten intolerants do, but it may help to remember that, even though you may not react in certain ways now, that a) dietary response is a valid diagnosis, and you're avoiding a whole host of health issues that could really bite you later! There are many on this board who also don't have the usual symptoms...I'm sure they have great advice on how to deal with this!

Also keep in mind that you're still new to these new habits... It helps to remember that it is a matter of gaining and maintaining good health; also, keep remembering how good you feel now as opposed to how you felt pre-gluten-free. Things will get better, I promise!

Oh... I'm also vegetarian! Please feel free to ask me anything/talk to me anytime... all the best to you!

[Elle4559]

Sounds like a confusing situation to be in right now. I was diagnosed the same way with a doctor telling me I needed to eat gluten free even though my blood results were inconclusive, I was bummed and confused by this. I understand how tough it is to tell everyone you have a "gluten allergy" when really you aren't sure exactly what you have going on and would really love to eat that pizza too! My recommendation is to continue eating gluten free for the time being to give your body adequate time to decide what it thinks about the diet but also to look at all possible reasonings for why your thyroid and other non digestive symptoms improved on the diet. Maybe eating gluten free or reintroducing meat expanded your diet and gave you more nutrients or you made a lifestyle change of some kind while gluten free that is helping you. For example if you were vegetarian pre-gluten free then it would have been harder for your body to absorb the nutrients such as iron, zinc, and B12 but once eating meat your body was given those nutrients in a more readily absorbable fashion. Don't settle for your diagnosis until you are comfortable with it and know you are or are becoming a healthy person.

[Ursa Major]

Liz, since celiac disease is hereditary, and you have become so much healthier on the gluten-free diet, it is very likely that you do have celiac disease.

There is still one option for diagnosis that is going to work, and that is testing through Open Original Shared Link. It will still be accurate up to about a year on the gluten-free diet. If your parents could afford that, you would be able to know for sure if gluten is a real problem for you.

[Creative-Soul]

If it helps any...I was vegetarian for many years before going gluten-free, and for a couple of years had to do battle with a hypoactive thyroid. I got it under control before going on this diet, and have been fine ever since. I also agree with Ursa Major...