What If No One Else In My Family Is Sick?

[sunnyland]

I want to try and get tested for Celiac so that I know if it's just an intolerance or if I am now more susceptible to other things I should be screened for and what not, not to mention the tax deduction on the expensive foods, but I just am kind of nervous.

1. I have no medical insurance so it will be expensive and hard...

2. The doctors here are kind of awful. I went to the urgent care with severe stomach pains, i thought my appendix had burst or something, and they gave me mylanta and a follow-up appointment. When I went to the follow-up appointment, the doctor took one look at me and told me I needed a healthier diet and to not drink any soda. Because I am fat, he assumed. I told him I don't drink soda and I practically live off of carrots and broccoli and then he told me that that was the cause of my diarrhea. First I eat unhealthy, next I eat too much vegetables so it gives me diarrhea. He didn't run any tests or do an examination or anything. He prescribed Ranitidine (which gave me severe headaches) and said I had IBS. I haven't been back.

3. No one else in my immediate family seems to have any symptoms at all. One of my mom's uncles or great uncles has Crohn's and so did his daughter I guess,

However, my cousin on my mom's side started having almost my exact same symptoms and it turns out her mom (also my cousin) is lactose intolerant and has stomach problems as well, so I recommended to them a gluten free diet but I have not heard back from them because my mom hates them or something so I rarely get to talk to them. I don't know if I'll ever know.

Anyway, I am also nervous that it will end up negative and that I don't have Celiac or an intolerance or anything and then I won't know where to go from there. I also don't want to start eating gluten again and the idea of a biopsy kind of freaks me out, especially if I need to eat gluten for 3 months (as i've read) before I can have it.

I've had symptoms here and there, miscellaneous ones for as long as I can remember, especially getting sick EVERY Thanksgiving. I thought it was a seasonal thing but I guess it could have been the stuffing, rolls, etc...haha... But from 2000 - 2003 (when I was 9 - 12) I was severely depressed all the time for no reason and stopped doing as well in school and couldn't focus as well on tests but I didn't think anything of it and everyone just said 'hormones'. Then in about 2004 I would have this fluttering sensation for a while just to the right on my belly button. As time went on it would get more pronounced until eventually it hurt. It would only hurt for a few minutes, but it was a really sharp pain and it throbbed. As time went on again it got worse and worse and took longer and longer. I thought it was related to my period but my period was never regular, even from my first one when I was 9 (same year I went from being happy and outgoing to being sad and paralyzingly shy [related?]), and the pain was sometimes there when I was on my period and sometimes when I wasn't.

Then in 2009 it would happen every single day instead of every few months, every few weeks, every few days. It felt like someone was stabbing me repeatedly in the one spot over my belly button. I would be fine and then it would just hit me and I would double over and couldn't even move it hurt so bad. It then got to where it was constant and I would just cry all day and I was so terrified that I was dying or something, I didn't know what was wrong. My dad would brew these HUGE batches of peppermint tea before he left for work because it did settle my stomach a little bit but if my stomach hurt before I made it I never would have been able to make it. Then it got to where it hurt so bad I had to take vicodin to be able to sleep, I couldn't just ignore it and fall asleep. That's when I went to the doctor and they gave me mylanta and suggested TUMs and told me to try Tylenol, which did actually help my stomach, it's the only standard pain reliever I hadn't tried before I went to vicodin. So I'm glad Tylenol works but there were times I would have to crawl to get it because I was in another room when the stomach pains doubled me over.

My poop has always been either diarrhea or constipation, diarrhea more often, and a weird colour and always smelled disgusting no matter what I did or ate. It also looked kind of frothy, if that makes sense, and I just though everyone was like that.

If I drank milk when my stomach was hurting (which is funny because all I crave when my stomach hurt was chocolate milk or toast) it made it 20x worse.

Since being gluten free I can concentrate, my stomach pain is gone, my poop is SOLID and brown and it's so weird, haha, I'm happier and more confident and less shy, my skin looks better just generally the tone of it and I don't get these rashes anymore. I don't think it was DH but I definitely got big red streaks randomly for seemingly no reason, and hives and just general patchy skin. I also have so much energy and lose weight really easily on a gluten free diet as long as I don't snack or drink a lot of liquid calories.

So I don't know, it seems like celiac/gluten intolerance, but I am just wondering why my mom and dad don't have problems or my grandparents, and if it is celiac what my 'trigger' was, since I've never had kids or anything.

Sorry this is long but I've just been frustrated thinking about how to arrange for a blood test or eating gluten again for the test and stuff.

Thanks if anyone replies.

[ravenwoodglass]

If your symptoms have resolved on the diet then you need to be on the diet. I do understand the need to have a diagnosis but you will need to go back on gluten for a couple of months before you get tested. You may still have a false negative.

You mention you have no insurance. Are you living at home with your parents? If your not contact your local hospital and their financial dept. They may be able to set you up on a sliding fee scale or if your income is low enough they can tell you if you qualify for either low cost health insurance or even Medicaid. I lost insurance a while back and have just a bit too much income for Medicaid but got a sliding fee scale that dropped my last bill down from $80 to $2.50. It is worth checking out. The fee scale involves any hospital treatment but does not apply to doctors visits. In other words it will cover the tests, clinic visits and hospital procedures but not a call to a private doctor. That is still a big help.

As to others not having symptoms, well often folks don't talk about GI related symptoms or they can think they are normal if they have had them for a long time. Celiac while genetic does not always effect everyone that has the associated genes so there can be cases where people with the associated genes will never develop the disease.

If one of your primary reasons why you want a diagnosis is the tax deduction do be aware that the process is time consuming and you can only deduct the difference between gluten free cost and the cost for the same item not gluten free. That means you need to note the cost of say a box of regular crackers when you purchase the gluten free ones and you need to keep all reciepts. You can also only deduct the amount of medical expenses that come to more than 7.5% of your income. You also need to itemize. Since the standard deduction this year, for example, is $5,700 most who are lower income and don't have a lot of other stuff to deduct are going to be better off just using the standard deduction. At least that was my case this year after I got all my medical reciepts together and compared the two. That might not be the case if you have had a lot of medical expenses so you should talk to a tax professional about it.

[sunnyland]

Yes, I still live with my parents but they don't have insurance either. I would be willing to put the time into taking note of all the regular food costs because the closest store to me that sells gluten-free food overcharges for even normal stuff and Trader Joe's is 10 miles away one way and you can get gas deductions and such. But that is just one reason. I really want to know if I should be getting screened for cancer and getting a biopsy and I also feel like if I was diagnosed my family wouldn't roll their eyes when I ask if I can get a different toaster or plastic spoons instead of wood, etc. or eat my gluten-free food when they have like 5 different flavors of chips and loaves of bread and I've just got rice cakes, lol.

But it's possible to pretty much be the only one in my family or would it be more likely to be a sensitivity/intolerance?

[Marz]

Since being gluten free I can concentrate, my stomach pain is gone, my poop is SOLID and brown and it's so weird, haha, I'm happier and more confident and less shy, my skin looks better just generally the tone of it and I don't get these rashes anymore. I don't think it was DH but I definitely got big red streaks randomly for seemingly no reason, and hives and just general patchy skin. I also have so much energy and lose weight really easily on a gluten free diet as long as I don't snack or drink a lot of liquid calories.

Booya, another gluten survivor Welcome to the forum! Sorry to hear your doctor's been so thick headed, unfortunately it's usually the case for us: doctors haven't helped, tests have come back negative, and we just went gluten free anyway because it gave us significant relief from symptoms. You don't need the celiac label to avoid gluten, though some people consider "gluten-intolerant" to be the same thing as celiac.

By the way, some people here who struggled with weight problems and c while on gluten, found it much easier to lose weight once gluten-free. So weight gain even when on a rabbit diet does seem to be a symptom.

I also get a weird itchy rash - strangely enough only started when I went gluten free - whenever I get mild CC (cross-contamination) with gluten. You might find your rash gets worse if you slip up on the gluten-free diet now, but maybe not. Didn't bother getting it tested, because doctors would probably label it something else and move me along.

Good luck with staying gluten-free and getting tested (Unfortunately mutually exclusive actions I'm afraid )

Oh, and to stay on your topic - I'm pretty much the only one suffering in my family from "classic" celiac symptoms. But both parents are struggling with random ailments that could be gluten-intolerance related. They're not willing to try the diet, I guess their symptoms are not bad enough. The only reason I tried the diet was out of desperation, so members of your family could be suffering but not talking about it, or consider it a "normal" part of being human.