Need Help Diagnosing Celiac

[Konaa]

Im not sure if my symptoms are those of celiac disease and im having a really hard time trying to figure this all out.

Syptoms

-Stomach pain all the time ( lower. abdomen. stomach area )

-burping

-constipation

-loose. thin stool

-shortness of breath sometimes

-freqent bathroom trips

-not full evacuated after going to washroom

-dizzynes mostly after eating

-pain worse after eating

I have done all the tests like ulcer blood tests. barium swallow/enema. ultrasound. stool sample.

Also did blood work that showed low vitamin D

I went to a naturpath doctor he says I might have celiac disease well i have tried gluten free for two weeks now. It still hurts everyday and makes work diffucult. My symtpoms started one day out of nowhere and like this for 6 months now.

This seems a little to severe with the constant pain to be ibs. I am going to get blood tests done but they costs $200 to do and I can barely afford this overly priced gluten free food.

Should i continue to do gluten free diet, any advice would be helpfull cause im sick of doctors not helping me.

[ShayFL]

If you want Celiac blood tests, you MUST keep eating gluten. 2 weeks even can cause a false NEG. So you need to eat plenty of gluten for a few months and then test.

It is not unusual for Celiacs to feel worse for a few weeks as the body heals. Think of a broken toe. It will heal, but it will be sore for awhile until it gets to a certain healing point. Same for your intestines. I didnt start feeling better till about 6 weeks gluten-free.

Also MANY Celiacs cannot digest dairy until the intestines heal. If you want to continue gluten-free and see if it will work, then you might want to cut dairy out too. Once you are symptom free, add dairy back in and see if you tolerate it.

SOY is another problematic food.

I suggest if you want blood testing to keep eating gluten.

If you decide, no way, not gonna pay for the blood tests, then I recommend cutting DAIRY and SOY while you heal.

And there is no need to spend a lot of money on (Pre-packaged) gluten-free foods and in fact while you are healing, they can impede progress. They arent easy to digest and if your intestines are damaged, then they will be all the harder to digest.

You MUST give you body time to heal eating simple easy to digest foods before adding in complex processed gluten-free foods and dairy.

Meats, Eggs, Nut butters for protein. Lots of fresh veggies (raw and cooked). Winter squashes. Sweet potatoes. Fruits. Rice. These foods are a lot cheaper than ready made gluten-free foods and they are naturally gluten-free.

Drink lots of water. Consider a good probiotic and digestive enzymes.

Mostly make sure if you want to go gluten-free without testing that you are 100% gluten-free. Get rid of old scratched Teflon pans, wooden spoons, toasters, cutting boards. These can all harbor gluten. Do not let anyone use wheat flour in your kitchen. You will get cross contaminated. Make sure no one double dips into your nut butters. Bread crumbs can get in you that way.

Check your shampoo, facial cream, washes, lipstick, etc. You can get gluten this way too.

Dont kiss anyone that eats gluten and has not brushed their teeth.

No Wheat, Rye, Barley or Oats in any form.

[Konaa]

Thanks for advice shay

I guess I will have to continue eating gluten free for a while then. I dont wana do the blood tests If i have to eat gluten. If I have to eat gluten again,Then it will take even longer to feel better, which is my main concern.

I have been eating spaggeti. meats. potatoes. corn. last few days. its hard to always eat fresh fruits and vegtables cause they can get pricey.

From what I have read it can take like up to 3 months to feel better.

I have been taking probiotics ,ultra inflamax and L-glutamine for healing.

My other concern is what if it isnt celiac disease then im kinda screwed. Do these syptoms really seem like celiacs?

Im 19 and been pritty health and fit all my life. I Dont know what else it could be celiac or ibs?.

[lizard00]

Welcome!

There are many folks on here, and many doctors out there, who feel that IBS is just a catch-all term. It's easy to say you have irritable bowel. WHAT is causing the irritation??? Under normal circumstances, your bowels should not stay chronically irritated.

I agree with Shay, stay away from the processed stuff. I'm a year into this and still can't handle much processed food. It's not good for you anyway, celiac or not. Fresh fruits and veggies are pricey, hands down. But there are two answers to this: 1)if you eat garbage, you're wasting your money because you're causing damage to your health. 2)explore buying frozen fruits and vegetables. It's not ideal, BUT you can find fruits and veggies that have nothing added to them and they work. If I do buy frozen fruits, I usually will dump them into a rubbermaid type container and leave them in my fridge so they're thawed when I want to eat them.

I would also lay off of eating a lot of corn. People without intestinal problems have problems digesting corn.

"Corn. I don't remember eating any corn..." Sound familiar?

[Konaa]

yes my doctor told me that ibs is something they say you have if they cant figure out whats wrong.

I guess celiac disease is the only thing It could be then. Unless I have something very uncommon.

Oh and does anyone know if store bought potato and egg salad( compliments ) contains gluten it has like mayonaise and mustard and a big list of other stuff i dont know what it is. I hope it doesnt or I screwed up my whole gluten free plan again.

[ShayFL]

Any kind of pre-made salads are suspect. You will have to ask them if there is gluten, but there is always the possibility of cross contamination.

What type of Spaghetti are you eating??

[leadmeastray88]

Hi Konaa,

Hang in there. This is the hardest part of it all - getting through the testing. And like ShayFL said, you need to be eating gluten (a lot, like 4-6 slices of bread a day) for the test results to be accurate.

Your symptoms, to me, seem very suggestive. Even if the blookwork comes back negative, I highly suggest getting in to see a GI and getting an endoscopy done to check for damage. Then voila - You have your diagnosis!

The problem with going gluten-free without testing is you'll probably second guess yourself and start eating gluten again since you don't have a clinical diagnosis. Lots of people here are self-diagnosed and are comfortable with their choice. But a clinical dx may help keep you on track diet-wise. After all, you don't need a doctor to be gluten-free!

If you're worried about the expenses, it's really not any more expensive than a normal household, I've found, if you stick with naturally gluten-free whole foods like fruits and veggies, meats and nuts, etc. You don't really need the processed gluten-free items and they're not good for digestion anyway. They're hard on your system at first.

Once you go gluten-free, you're right, it takes about 3 months until you feel completely better! But trust me - the wait is worth it. You won't believe how much better you feel, if you are truly Celiac/Gluten Sensitive or whatever you want to call it.

Welcome and I hope you feel better soon!

Take care

[*lee-lee*]

gluten can be hidden in so many unlikely foods so while you were trying to be gluten-free, there's a good possibility that you were still getting it from somewhere. try shopping the perimeter of the store when you go shopping. most of the foods in the middle aisles are processed and contain some form of gluten.

there are some companies that are very good at labeling their products. i'm blanking on the list of companies right now but i'm sure someone can provide the full list. i've been eating pretty much the same things for the past 4 months now and i look up every single thing online before i purchase it.

i haven't tried any of the bread and eat very little of the pasta. maybe 1 serving a week vs nearly every day before i was diagnosed. i've found that i feel very bloated and just plain icky afterwards so it's just easier to avoid it. stick with fruits, veggies and meats until you body heals. i also can't tolerate much dairy anymore either. just some milk with my cereal in the morning and that's usually it. i eat a lot of eggs and rice...cheap and it fills me up. i'm on a very tight budget right now, as i am not currently working, so i know how frustrating it can be when it comes to the grocery bill.

[Konaa]

I am eating a lot of brown rice noodles

When i see my specialist for stomach biopsy will it show if I am not eating gluten for the last month or so>?

[ravenwoodglass]

I am eating a lot of brown rice noodles

When i see my specialist for stomach biopsy will it show if I am not eating gluten for the last month or so>?

If you are going in for a biopsy it is imperitive that you still be eating a full gluten diet. The risk of a false negative are very high if you are gluten free or gluten light. The biopsy can miss damaged areas even in folks that are on a full gluten diet and fully symptomatic, the damage can be patchy and we have 22 ft of small intestine so it can be missed. Please if you are planning on biopsy or blood testing be sure you do not go gluten light or gluten free before hand. That said if you are gluten free now and are seeing resolution of symptoms and then when you go back to a full gluten diet you become very ill that is also a strong indication that the diet is needed but not a lot of doctors will give an official diagnosis with just dietary response alone.

[Konaa]

Well my main concern is feeling better tho, im in pain every single day and I cant keep calling in sick or I will get fired from my job. If the biopsy is negative its not a big deal, i will still know i have it if i feel better being gluten free.

I have been waiting for 4 months already to see a specialist and I still have to wait till december 8th to see one. and when I do i gota wait another 1-2 months to get the test done. I live In Canada, ON the worst health care I have ever seen in my life. A doctor once told me if I had celiac disease it should be better in 1-2 days going gluten free./

[lizard00]

A doctor once told me if I had celiac disease it should be better in 1-2 days going gluten free./

That's a bit ambitious, but in most cases, improvement is seen pretty quickly in some symptoms. Full recovery can take months or even years, depending on the severity.

[Konaa]

I have been gluten free for 3 weeks now with no improvement. starting to think I dont have celiac disease. what else can cause constant stomach pain all the time.

[lizard00]

I have been gluten free for 3 weeks now with no improvement. starting to think I dont have celiac disease. what else can cause constant stomach pain all the time.

Do you have food allergies? If I eat dairy, it gives me terrible reflux. I'm allergic to egg whites, if I eat them, my stomach feels like it's on fire.

Have you tried keeping a food journal? Write down EVERY single thing you put in your mouth and when. If it's something else, you'll see a pattern immerge. Some reactions are immediate, whereas others are delayed and can show up the next day.

[Konaa]

I dont have gluten. or dairy or eggs or any of that stuff for last few weeks and no results food doesnt seem to affect it. And when i very first got this it came out of nowhere 100% fine one day and all of a sudden i felt like i was gona die sweating. pain. burping i felt like throwing up but I didnt.

I was looking up two bugs called Dientamoeba fragilis and Blastocystis hominis

same symptoms of ibs so I thought maybe that was it.