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Is A Formal Diagnosis Necessary?

nikkigal

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nikkigal Rookie
nikkigal
Posted

Hey,

So I am pretty convinced I have celiac's:

A list of symptoms:

1. bloating, gas, abdominal cramping

2. iron deficiency anemia

3. D or loose stools with lots of undigested food and muscus

4. dermagraphism, hives, itchy skin

5. more fatigue than most people my age, at college I actually get a descent amount of sleep but am always exhausted

6. pica- i love flour and uncooked pasta

7. headaches - throbbing pain on one side of my head, about one every 2 weeks

8. There are a lot of stomach related issues in my family, but no one ever feels the need to get tested

colonoscopy negative. currently on levsin .125 mg twice a day for IBS-D. However, I feel really strongly celiac's might be the answer.

Anyways, Is it necessary to have a formal diagnosis? I don't know what I keep going through these procedures such as a colonoscopy for a label.

I am going to try the gluten free diet for two weeks and see how it goes.

The only benefit I can see to having a formal diagnosis is at school to get gluten free food with my meal plan which is required. I know they provide special food, but you need documentation. Is there any other benefits to having a formal diagnosis?

Thanks!

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kareng Grand Master
kareng
Posted

Colonoscopy doesn't diagnose Celiac. An endoscopy does. Did you have the blood tests for Celiac? Might want to start there.

Of course, you can eat or not eat, whatever you want, right? So, you can certainly try the gluten-free diet for a while and see what happens.

Fairy Dancer Contributor
Fairy Dancer
Posted

It depends if you can afford the gluten free diet without any kind of financial considerations being made I guess. I mention this because presently I am arguing with creditors over payment arrangements and what they allow for food each week is ludicrous unless I want to live on cheap bread, pasta and other processed foods that taste like the box they come in. If I need a larger allowance for food because I can't fill up on these foods I need to know about it!

Otherwise I would just put myself on a gluten free diet and see how it affected me and not worry too much about an official diagnosis. On saying that I would like to know if eating gluten is the reason I feel so ill most days so I am going to ask for a blood test when I see the dr next week. In the meantime I have put myself back on gluten containing foods again (I went gluten free for 5 days or so recently as an experiment but don't want a false negative on the test if I have it) and its not going well. 5 days into being off gluten I was able to sit up for a few hours now and then, 3 days back into being on gluten and I have worse stomach pain and am back to having to lie in bed all day because I feel like death warmed up. However until I get the test or try another gluten challenge I can't be sure if the improvement was coincidental or related. Plus the diarrhoea is back and is running through me today :(

I am also not sure if a problem with gluten can make you feel so fatigued and light headed/dizzy on standing or sitting up that you need to spend most of your time lying in bed but with the stomach upsets I am getting as well I was considering it as a possible issue.

Poppi Enthusiast
Poppi
Posted

I personally chose not to get an "official diagnosis" for a coupe of reasons.

The biggest one was that I felt great after being gluten free for a month and there was no way i was doing the gluten challenge.

The other one was that I do not currently have life or critical illness insurance and I am pretty sure an official celiac diagnosis would make that difficult to obtain.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I had testing done and was negative, but definitely have a severe reaction to gluten and canNOT have it. If "proof" is required at your school, I'd fight it. I'd show them primary sources demonstrating how many people test negative but have celiac or gluten intol, and I'd make a huge fuss. (I was really involved in student govt in college. There was a "food committee" among others, and they would fight for positive changes in dining services. Requiring "proof" is discriminatory based on socioeconomic status (not everyone can afford the expensive tests) and disability (not everyone tests positive but that doesn't mean gluten doesnt hurt them), which are big no-no's in academia.

I know it takes energy to fight, but you're worth it, if it helps.

I had similar symptoms as you. I made it through college, but by the time I really needed energy to practice in my field, I had fibromyalgia and severe anemia and had to stop working. Gluten-freedom in college might changed my life. (I've only been gluten-free a month. I've finally got some hope about work again!)

Anyhow sorry to ramble. Good luck!!

NeilK Newbie
NeilK
Posted

Good luck with your diet. You may want to try a vitamin B shot. It did *wonders* for me. It was like a miracle in the way it turned around some of my symptoms, like brain fog.

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