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What Are My Options Here?

thesickchick

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thesickchick Newbie
thesickchick
Posted

I would firstly like to say hello and thank you to anyone who responds to this in the future. So here is my situation. I've been down on my health since graduating from highschool, and that was about 4 years ago. I am now 23 years old and have been looking for an answer since the day this all happened. My only problem is that I lost my insurance back when I was 18, just before I got sick.

My symptoms are unexplained weight loss, raised itchy bumps on my legs and back, abdominal pain, constipation, occasional diarrhea, poor dental health, dry mouth, achy joints, fructose intolerance, and chills. I have suspected that I may be celiac in the past but its so hard to get tested for it without insurance. I've gone to the free hospital and clinic in my area many times before. I've had ultra sounds, blood tests, pelvic exams, urin tests, regular physicals, etc. I am unable to see a specialist at the moment and I am currently trying to see if I qualify for mediCal.

The reason I am writing this is because I have been suffering with these conditions for years and I am still undiagnosed, despite seeing so many doctors about it. What I want to know is if I should continue to hold out and hope that one day, hopefully soon, I will be tested for celiac disease. Or if I should take matters in to my own hands and try the gluten free diet without a diagnosis. I am currently fasting on nothing but water because i'm too scared to eat anything right now.

Noone in my family has ever been diagnosed with the disease, but i'm sure that doesn't really mean anything.

I'm really scared and I just want some relief from this pain. I'm so afraid that I have it and i'm frightened of getting complications. I'm severely underweight, little over 100 lbs. I have no insurance and am currently unemployed but looking. Please help. Thanks!

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psawyer Proficient
psawyer
Posted

If you have it, the good news is that you are young. The serious complications that many of us have seen are the result of years and years of undiagnosed celiac. When caught early the prognosis is actually very good.

thesickchick Newbie
thesickchick
Posted
  • Author

If you have it, the good news is that you are young. The serious complications that many of us have seen are the result of years and years of undiagnosed celiac. When caught early the prognosis is actually very good.

Hi psawyer, thanks for the reply. That's quite a relief! I feel the need to get a diagnosis so that my friends and family can take me more serious. They as well as even some doctors think that my symptoms are psychological...But at the same time, I hate the idea that I could be unintentionally damaging myself.

FooGirlsMom Rookie
FooGirlsMom
Posted

Hi,

I understand your frustration. I started to have "symptoms" in my early 20s also. I was not underweight...just the opposite I started to gain weight for no reason. We all have different manifestations of the disease.

I am concerned that you are so underweight & fasting right now on water. Sweetie, you need to eat something. Can you tolerate gluten free rice or gluten free rice pasta? If everything is making you sick, try eating one food at a time every hour or two. Try a banana. Wait an hour. Eat 2 eggs. Wait 2 hours. Grazing all day may help. There was a time in my life, I had to do food combining - meat with veggies, veggies with starch, etc. because I couldn't digest meat & carbs together. But you must keep eating and find foods (Even single ones) that don't make you sick.

If you think a diagnosis is near in your future, then it might be worth waiting for...but...if it's not...the fastest way to find out if gluten is your problem is to go gluten-free. At your age, you should see a difference more quickly as the damage to your body should be less. I saw faster results in my 20s than now at 42.

I hope you feel better soon,

FooGirlsMom

thesickchick Newbie
thesickchick
Posted
  • Author

Hi,

I understand your frustration. I started to have "symptoms" in my early 20s also. I was not underweight...just the opposite I started to gain weight for no reason. We all have different manifestations of the disease.

I am concerned that you are so underweight & fasting right now on water. Sweetie, you need to eat something. Can you tolerate gluten free rice or gluten free rice pasta? If everything is making you sick, try eating one food at a time every hour or two. Try a banana. Wait an hour. Eat 2 eggs. Wait 2 hours. Grazing all day may help. There was a time in my life, I had to do food combining - meat with veggies, veggies with starch, etc. because I couldn't digest meat & carbs together. But you must keep eating and find foods (Even single ones) that don't make you sick.

If you think a diagnosis is near in your future, then it might be worth waiting for...but...if it's not...the fastest way to find out if gluten is your problem is to go gluten-free. At your age, you should see a difference more quickly as the damage to your body should be less. I saw faster results in my 20s than now at 42.

I hope you feel better soon,

FooGirlsMom

Thanks FoodGirlsMom,

Yeah, I broke the water fast yesterday evening, and I had some rice and a yogurt which didn't seem to bother me. I also had some gluten free bread that I bought early last week which I didn't get sick off of as well. So I even felt better from not eating gluten for 1 day. I'm about 80% positive that I could have a gluten problem, but i'm thinking that getting an official diagnosis of celiac would benefit me greatly in the long run. The soonest I can see about this problem is in about 1 month. But the waiting is killing me :ph34r:.

thesickchick Newbie
thesickchick
Posted
  • Author

I also forgot to mention that fruit or anything with too much sugar makes me terribly ill. Diabetes runs in my family but i've been tested for it several times recently and the results came back negative. Could this all be related to celiac?

Roda Rising Star
Roda
Posted

As of Jan. 1st adult children can be on their parent's insurance if they don't otherwise have it offered through their job I think up to age 26. Someone else might know more. However, that doesn't help your pain right now...

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thesickchick Newbie
thesickchick
Posted
  • Author

As of Jan. 1st adult children can be on their parent's insurance if they don't otherwise have it offered through their job I think up to age 26. Someone else might know more. However, that doesn't help your pain right now...

Yeah, neither of my parents are insured at the moment x.x. I lost my insurance when I was 18 because my dad got laid off around then.

Skylark Collaborator
Skylark
Posted

Take matters into your own hands! It does not take insurance to try the diet. The only downside is you have to be willing to stick to a strict diet if you turn out to be gluten-sensitive because you won't know for sure whether or not you are celiac. You can go back and gluten challenge later for about three months and get tested if you choose.

Also if you can afford it you can try this home test kit while you are still eating gluten. It is a home anti-TTG IgA test. Open Original Shared Link Also depending where you are, some cities in California have celiac clinics that test for free or a reduced cost.

Open Original Shared Link

https://www.celiac.com/blogs/232/New-Celiac-Disease-Clinic-at-UCLA.html

I self-diagnosed. It turns out I tolerate gluten so poorly that I am just not interested in going back for a challenge and my doctors tell me the tests are not good enough to be worth the trouble anyway. (I suspect I truly am celiac anyway.)

thesickchick Newbie
thesickchick
Posted
  • Author

Take matters into your own hands! It does not take insurance to try the diet. The only downside is you have to be willing to stick to a strict diet if you turn out to be gluten-sensitive because you won't know for sure whether or not you are celiac. You can go back and gluten challenge later for about three months and get tested if you choose.

Also if you can afford it you can try this home test kit while you are still eating gluten. It is a home anti-TTG IgA test. Open Original Shared Link Also depending where you are, some cities in California have celiac clinics that test for free or a reduced cost.

Open Original Shared Link

https://www.celiac.com/blogs/232/New-Celiac-Disease-Clinic-at-UCLA.html

I self-diagnosed. It turns out I tolerate gluten so poorly that I am just not interested in going back for a challenge and my doctors tell me the tests are not good enough to be worth the trouble anyway. (I suspect I truly am celiac anyway.)

Hello, thanks for the links. While I have no problem going on the gluten free diet myself, i'd like to have some proof that I can give to my friends and family so they can take me serious. Life would be very hard if I did not have a diagnosis, because people around me just wouldn't understand no matter how much I explain it to them.

I went to the first link a couple of months ago because it was said to be free, but when I called them up to schedule an appointment, they said it would cost almost $1000. I'm really lost on what I should do here. I don't have the kind of money to see about this thing :(

Skylark Collaborator
Skylark
Posted

The home test kit is $50 in Canada, and it can't be too much more in the US. I don't have a formal diagnosis. Nobody has questioned my decision to go gluten-free. My heath improved dramatically and because of it people are supportive. I bet you didn't have a formal diagnosis for the fructose intolerance either.

You sound quite ill, and you may get some real relief gluten-free. Why keep making yourself ill when the only treatment is diet anyway?

txplowgirl Enthusiast
txplowgirl
Posted

Hey Sickchick,

I was in the same boat as you so to speak. Felt like I was dying. I went ahead and tried the diet anyway because with my thinking later on in a few months or in a few years when i'm at the point I have ins I could do the gluten challenge and get tested.

Best thing I ever done AND I told my family and friends that I had a positive diagnosis. No one has asked to see the actual test results yet because they believe me because they have seen the results of my miraculous turnaround healthwise.

Believe me, try the diet stict for at least 2 to 3 months and then try the challenge. I bet you'll believe it then when you have a nasty reaction.

Just my opinion mind you, but I really hope you get to felling better.

Vicky

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