Can't Afford To Get Tested

[cincichick]

I am new here and looking for some advice. I am 25 and have always been healthy until recently. I have been going to my doctor for over two years now trying to figure out what is wrong with me. These are my symptoms:

Fatigue

Gas

Bloating

Constipation

Weight Gain (I have always been under 135 lbs but recently got up to 150...went down to 130 rapidly without dieting around the time of my wedding...shot back up to 140 right after the wedding and have been stuck there since)

Headaches (chronic migraines since 6th grade)

Joint pain

Restless Leg syndrome

Extremely dry skin under my arms that comes and goes

My sister and my mother have been diagnosed with Hypothyroidism but all of my tests come back negative. I feel like my family and my doctor think I'm nuts and that it is all in my head. The doctor keeps trying to say it is depression but none of the depression medications work. I went gluten free over the summer for a few months and felt a little better but still had a few of the symptoms. My gluten free diet seemed to be a real bother to my family so I went back to eating gluten. I also want to get tested so I went back on gluten so the tests will be accurate. I planned on getting tested at the beginning of next year when I have a little more money. I just found out that my insurance is changing next year and I won't be able to afford the test anyway.

Do my symptoms sound like Celiac? Could it be something else? Should I go back to being gluten free? HELP!!

[Dixiebell]

Welcome!

Yes, those could be celiac symptoms. If you can't afford blood testing, then a trial of eating gluten free could be your test. You could try it for three months and see if you have any relief of your symptoms.

Since eating gluten again, have you noticed any changes?

[cincichick]

I did start to feel a little better when I was gluten free. However, I think I convinced myself that it wasn't working because as everyone knows it is extremely hard to be gluten free. I started to miss all of the gluten filled foods I used to eat. Also, my family wasn't making it very easy because they didn't seem to try very hard to understand or learn anything about being gluten free.

After going back to gluten I didn't notice any difference at first but now all of my symptoms seem to be coming back. It took about a month for the symptoms to fully return. Is that normal? I hear most people have stronger more immediate reaction when they eat gluten after being off of it for awhile. My headaches are the worst and I have had one every day this week.

[Dixiebell]

Different people all have different reactions and reaction times. If you have had symptoms resolve while gluten free and had symptoms return when eating gluten again, this is a test itself, I would say you need to be gluten free.

What you need to do is to take charge of your food. I believe 25 is old enough to purchase and prepare your own foods. If you are still living with your parents, you could put your speciality items/treats in your room.

Some people don't want to think that someone could get sick from foods, they could be in denial. If you have it that means they could too. The best thing IMO is to do what you need to do to feel better for you and not worry about what your family or others think.

[ycavaz]

Those symptoms could be your thyroid also. Most docs will only test the TSH which is practically useless. If you post your labs I might be able to offer advice.

[cincichick]

Thanks everyone for replying!! I am married and have my own house so I do my own shopping and I can easily keep my gluten free foods separate. My husband is extremely supportive and will eat mostly gluten free with me (except for his snack section of the pantry!!). The biggest problem is when I go to my parents for holidays. I think I will try to go gluten free again and see how I feel.

My doctor has not been very helpful which seems to be normal with doctors and Celiac. I know he has only tested my TSH level and I unfortunately never get the lab results. I guess I could probably ask him for a copy. I did see his screen one time and I believe my TSH was 3.6 which is considered normal in most labs. I have read a lot of articles that say that the normal high should be 3.0 which would make my levels slightly high. I have also read that people with Celiac are more likely to have other autoimmune diseases.

I think I will go gluten free again and look for another doctor. I will start saving up the money to go see a doctor and get tested for Hypothyroidism. I have pretty much given up on getting tested for Celiac. I am tired of feeling so sick and it will take too long to save up the money for the test.

[burdee]

My doctor has not been very helpful which seems to be normal with doctors and Celiac. I know he has only tested my TSH level and I unfortunately never get the lab results. I guess I could probably ask him for a copy. I did see his screen one time and I believe my TSH was 3.6 which is considered normal in most labs. I have read a lot of articles that say that the normal high should be 3.0 which would make my levels slightly high. I have also read that people with Celiac are more likely to have other autoimmune diseases.

I think I will go gluten free again and look for another doctor. I will start saving up the money to go see a doctor and get tested for Hypothyroidism. I have pretty much given up on getting tested for Celiac. I am tired of feeling so sick and it will take too long to save up the money for the test.

Yes, a TSH of 3.6 is high enough to consider hypothyroidism, especially with all your symptoms. Also people with celiac or gluten intolerance are more likely to have other autoimmune diseases, like Hashimoto's thyroditis which causes low thyroid function. Gluten antibodies can attack any organ of the body. So gluten is suspected as a cause of Hashimoto's. Likewise, abstaining from gluten will stop the onling damage to your thyroid. However, you may still need thyroid supplements to improve thyroid function after years of autoimmune damage.

My doc recently diagnosed me with hypothyroidism based on my TSH (3.71) free T4 (1.09), celiac diagnosis (2004) and reported symptoms (chronic constipation, low body temperature, cold hands and feet, increasing fatigue, dry skin, etc.) I've taken a low dose thyroid supplement for 6 weeks and feel much warmer, energetic and 'regular'.