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Late Diagnosis?

Guest ajlauer

By Guest ajlauer
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest ajlauer
Guest ajlauer
Posted

Hi. This is a big step for me. I've been reading these boards for a few weeks. My 3 yr old had some food allergies. I had her tested - to confirm my suspicion to eggs. She's allergic to egg, corn, peanuts, wheat, barley, rye, and oats. I had seen a news segment on celiacs, so started to research. Since it's all about wheat, rye, barley, and oats - it's caught my attention. I haven't had her tested for celiacs yet. She's currently doing a food challenge. Anyways... then I had my 10 yr old son tested for allergies. Pretty much the same thing - wheat, rye, barley, oats, and a handful of other things. My research on celiacs has gone from "maybe my daughter has it" to "maybe we all have it". As I read about other people's stories and symptoms, I see A LOT of myself in everybody else, if you know what I mean. After doctors telling me I was getting stomach flu (every 3 weeks for 8 months, at one point)... and then just telling me flat I was a hypochondriac and causing myself to have diarreah and vomiting - I finally just accepted that it must be normal to have stomach cramps all the time. I've simply adjusted to the unpredictable bowel (constipated one week, going every hour the next week) and stomach cramps - particularly bad after I eat a bowl of cereal or a sandwich. Seems the "healthier" I try to eat, the sicker I get. The last 3 days have been really bad. I couldn't even tell ya what I would *suspect* it to be. I've never been this sick (vomiting, diarreah, horrendous stomach cramps - felt like I swallowed 1000 razor blades) for 3 full days before. As soon as I'm back to a "regular" diet for a few weeks, I plan to be tested for food allergies as well as celiac disease. Anyhow... I'm curious.... I have read enough to know that untreated celiac disease can cause a ton of problems. I'll be 28 in July. How likely is it that someone could go this long without a diagnosis? And if I do have celiac disease.... how likely is it that there is some permanent damage by now? I know that no one here is an actual doctor, and can't give actual medical advice... I won't hold anyone to what they say. I'm just impatiently curious - always looking to see what everyone else thinks. I've had stomach cramps and problems for.... well, I guess since high school. So about 14 years now. Fatigue was a huge problem, starting in high school. I mean HUGE. I almost didn't graduate (was formerly a straight-A student) HS because I could not force myself to stay awake, no matter how hard I tried. The only one thing about me that does not seem to point to celiac disease, is that I am overweight. Have been my entire life. But you know what? Most times that I've tried to diet, I've stuck to the stupid "food pyramid". Yeah, ate lots of breads and cereals. Stupid government nutritionists!!!!!! I would love to hear your opinion. And I will go to the doctor in April, after on a regular diet for 2 weeks - and our new insurance kicks in. Thanks to everyone. *hugs*

Oh yeah... did anyone else have allergy testing done first? I'm curious too as to how many with celiac disease are tested for food allergies, and show allergic to wheat, rye, barley, and oats. Thanks. :)

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KaitiUSA Enthusiast
KaitiUSA
Posted

Celiac is a very underdiagnosed disease. Many people end up undiagnosed for sometimes decades. Even with very bad damage to your intestines going gluten free should heal it. Most of the time they say within 6 months the intestines are healed but it varies from person to person. If there is already allergies in the family to those things you may want to be tested for celiac. If you are off of wheat,rye,barley, and oats the tests would come back negative. You should eat these things to be tested. Enterolabs may be a possibility for you. They don't tell you to go back on gluten ...if you have had it within 2 years I think it was. Open Original Shared Link That is their site and they have a FAQ page that answers that question as well as others. I have not been allergy tested for foods as of yet but I plan to get that done. The symptoms you are describing do sound like celiac so it is worth checking out. If you need any help let me know and I hope you guys get some answers :D

ianm Apprentice
ianm
Posted

Your story has a lot of similarities to mine. High school was a nightmare. I was put into special ed classes because the brain fog and fatigue was so bad. I didn't even have a clue that I had a food allergy until I was 36. I also had weight problems and was on the verge of diabetes. I lost some much and missed out on so many things because of this disease. Over the past 14 months since going gluten-free my life has transformed dramatically. I discovered it after reading the Atkins diet book. There is a whole chapter on food allergies. Dr Atkins was a very harsh critic of the grain based food pyramid. The Atkins diet works for me. For the first time in my life I feel healthy and can exercise. This group is the right place to be. Keep at it, things will get better.

Ianm

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello ajlauer,

welcome to the message board. Yes, the good old "food pyramide". It's not only your government nutritionists, it's pretty much all over the world. As a german I lived in germany all my life. And I remember as a child, reading the back of the Cornflakes packages all the time and they had the food pyramide on these packages as well. And I always thougth: "Hm..., strange..., energy. You should get energy with this. So why isn't it working already?" :lol: Now, afterwards I have to laugh about how "close" to the solution I actually was, but I got never diagnosed. My doctor and me found out I had celiac last year, when I was 27. Actually 5 days before my 28th birthday :lol: and after about 7 years of pain and suffering. So that's how it goes. And a lot of people on here were actually older, when they got diagnosed. So it's not that unnormal.

Hugs, Stef

Ally2005 Apprentice
Ally2005
Posted

Hi I have come to know five people who are over the age of 70. They all went undiagnosed for at least 37 years and longer. I was VERY encouraged to see that they are healthy and well even after going untreated for so long. This makes me wonder the significance of the associated disorders.

Ally

cdford Contributor
cdford
Posted

I was in my mid forties and fully disabled before they found the celiac disease...after my daughter got so sick they diagnosed it in her. Knowing how much of a role nutrition played in our immune systems, I was milling my own wheat and baking my own breads. I was such a great wife and Mom! The one good thing that did come of all of that is that we finally got "sick enough" to be diagnosed.

Guest ajlauer
Guest ajlauer
Posted

Hey, thanks for all the replies and information!! It's taken me a few days to figure out how to get back to this post. *giggle* I'm going to the doctor monday. When I scheduled the appointment, I mentioned I wanted to have bloodwork done for food allergies and celiacs, they were like "What's that?" and "I didn't know they have a blood test for food allergies." So now I'm thinking, 'Oh gosh, here we go again!" My insurance changes in April, so if this doctor doesn't do me any good, I'll actually be able to "shop around". Thanks again everybody. I'm spending hours on these boards now. hehe.

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Guest BellyTimber
Guest BellyTimber
Posted

In my case 47 years.

Underweight is not compulsory, I went from emaciated to "spreading".

There is every permutation of doctor situation in our stories in this forum as no doubt you've already begun to read.

I think there actually are people who are suited to lots of grains.

Among them, there are no doubt celiac disease sufferers also.

I think the "pyramid" has to be re-proportioned for each individual.

Very best of wishes.

Michael :)

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