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Yet Another Newly Diagnosed Celiac

Wandering Hermit

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aljf Apprentice
aljf
Posted

That was a silly thing for a doctor to say! She IS right that celiac disease is finally getting some attention-- but it is well-deserved attention if 1 in 133 people in the US have celiac disease, and only 4% know it! (U of MD study)

Your blood test results are mixed and suggest possible celiac disease. In a case like yours, the endoscopy would be recommended.

However, if you are finding that cutting gluten out of your diet is making you feel better to a large degree, then why not just do it?

For me, I find the stress/anxiety/discomfort/constraint of a gluten-free lifestyle to be pretty great, so I would want to have the endoscopy just to make sure. I didn't find the endoscopy at all painful or upsetting-- it's really unfortunate that you had a bad experience with the endo in the past, because I think a positive result would now give you the resolve to be gluten-free... and a negative result would let you not worry about it all so much!

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Rikki Tikki Explorer
Rikki Tikki
Posted

If I were you Hermit I would just make sure you are gluten free. If it shows even a weak positive, if you had been off gluten it can show a normal blood test.

It's "Trendy" to have celiac. It's statements like this that make my blood boil. :angry: It is also statements like this that make the medical profession look foolish. They might view it as trendy because so many people are being diagnosed with it!

It sure is not a disease I would of chosen. But on the other hand there are so many worse things we could have. But TRENDY?

ianm Apprentice
ianm
Posted

They're labeling it trendy because there is no cure that requires a prescription. The only thing you can do is to change your diet and live a healthy lifestyle. Because they can't write a prescription(s) they won't be getting a kickback.

KaitiUSA Enthusiast
KaitiUSA
Posted

What crap...trendy? Diagnosing it is trendy? Then why are over 2 million people in the US walking around undiagnosed from it. Celiac is finally getting some well deserved attention...

as far as your results are concerned you did not get a full celiac panel but you have some mixed results. I think that is it best to avoid gluten because something put those results higher then normal and there has to be something going on..

Wandering Hermit Contributor
Wandering Hermit
Posted
  • Author

Yeah. This same doctor made a comment about it being 'overdiagnosed.' Idiot.

Anyway, I am in the process of trying to get an appointment with a GI. I'm going to ask them to do the full blood panel. But unless I hear otherwise from a GI I can trust, I am staying 100% gluten-free.

Rikki Tikki Explorer
Rikki Tikki
Posted

Hermit:

If you stay off gluten and then have the blood tests won't it show negative?

KaitiUSA Enthusiast
KaitiUSA
Posted

Yes Sally. For 3 months prior to testing you should be gluten free or the results can come back not accurate.

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Wandering Hermit Contributor
Wandering Hermit
Posted
  • Author

I think there is confusion in the last couple of posts...

I'v been gluten-free for a week, and I want to get another blood panel to corroborate my initial diagnosis - if I do that within the next week, I'm hoping there are still enough antibodies that the full panel will catch them. I think what Sally was getting at is perhaps next week's tests won't be accurate since I have been gluten-free for 2 weeks.

Now, in 3 months, my doctor wants another test done to confirm that the gluten-free diet lowered the counts. That also makes sense. The point with this test is that I want to be strictly gluten-free for 3 months to hopefully get a negative result.

Pharmer Newbie
Pharmer
Posted

Well, I have just joined this website and been reading most of this thread. I have just had some worrying news from my doctor - he thinks I may have celiac disease based on my symptoms (very like severe IBS), the fact I come from the UK, and that my blood tests show I am anaemic (with low iron and ferritin levels), also with an elevated IgG reading (40.9). He is going to give me an endoscopy in a couple of weeks to try and make sure.

I am also feeling a bit overwhelmed by this - I sincerely hope that I don't have celiac disease because it looks to me like it's going to be a major life-changing event. To top it off, I am only 26, and only 2 years ago I had to have a major stomach operation. So my questions are these:

- How likely is it that I have celiac disease based on the signs listed above?

- Does celiac disease really impact your social life - i.e. not able to eat out, people not inviting you for dinner because they can't cook for you, not being able to drink beer or eat curry?

- Could my stomach operation (which was to correct a hiatus hernia 2 years ago) have triggered this?

Any help you can give would be very gratefully received! (I hope that it was appropriate to reply to this post rather than start a new thread).

Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Pharmer:

I can only answer your questions with my own experience. It looks like your level would indicate celiac. For the biopsy to be accurate you would have to continue eating gluten.

Many of us were diagnosed with IBS initally.

Anemia is one of the signs.

Surgery can kick celiac in gear.

It does impact your social life. It changes things. There is a gluten-free beer but I haveen't found it to be tasty. Eating out is kind of a problem. You have to be careful with seasonings, sauces, cross contamination.

Check any medications you take, shampoo's etc. I found making a binder with safe ingredients and not safe ones. You can also do the same with food.

You can also take your own food with you when you go places.

Just keep in mind there are way worse illnesses we could have.

Best luck to you and glad you found us! :D

KaitiUSA Enthusiast
KaitiUSA
Posted

Have you had a full celiac panel done before or is that the only one you had done? Anemia can come with celiac. Surgeries can trigger celiac. You can eat out at certain places which have gluten free menus. There are still alcoholic beverages you can have which you can find on this site. There are still alot of things you can have it's a matter of finding them out first. Also many celiacs are in fact misdiagnosed with IBS.

Pharmer Newbie
Pharmer
Posted

Hi Kaiti and Sally - thank you for your replies. This is the first blood analysis I have had done. The doctor is going to do an endoscopy (with biopsies) and also a colonoscopy. Is the colonoscopy really necessary? I thought only biopsies were required to diagnose celiac disease...

Also, I notice that some of the threads on this board discuss the paranoia that some people feel about injesting gluten. Perhaps I am missing something, but if the cancer risk is 40-100 times greater than average for celiacs that don't avoid gluten, but the average cancer risk is actually very low anyway, the risk to celiacs is still pretty low in absolute terms. So, surely the main reason for avoiding gluten is to avoid the disrupting and uncomfortable symptoms?

Sorry about all these questions!

celiac3270 Collaborator
celiac3270
Posted

In a sense that sort of thing bothers me, but I know that people who say that are just being insensitive, ignorant, and insulting. We don't even have 4% diagnosed (past poster mentioned) it's .1%....ridiculous. Also as another poster mentioned, celiac disease is finally getting the attention it deserves! Don't let people like that get to you. Also, you may not see a dramatic change in blood work in three months, so don't be alarmed if it isn't normal again. It could take you half a year or longer to get your levels completely normal.

mom Rookie
mom
Posted

:rolleyes: It can take many months and even years to have normal blood results. My GI doctor has told me that with a lot of damage, normal blood resuts for iron can take a very long time to regain in the normal range. Also for other blood resuts , the same is true. It will be different for different peole, depending on the situation at hand. The main thing is to br consistant with, eating gluten-free and taking care of ones health.

Mom :):P

tarnalberry Community Regular
tarnalberry
Posted

pharmer, while the risk of cancer may still be relatively low, those sorts of increases mean that you're still looking at a very real risk that you can completely eliminate. two orders of magnitude reduction is nothing to sneeze at!! studies have shown that the life-expectancy (and quality-of-life) of a celiac who does not follow the gluten-free diet are much lower than those who do. I forget exactly how many years of life not following the diet took off, on average, but I recall there being two digits in the number (so, at least >= 10). since some people do not experience severe symptoms, avoiding the increased rate of early death may be a main motivator for staying gluten-free for some.

Pharmer Newbie
Pharmer
Posted

Hi Tarnalberry and thanks for the reply. That certainly makes sense, and I will definitely be following the gluten-free diet as soon as the biopsies have been collected. I suppose that's the point - even if one is asympotmatic, following a gluten-free diet is one thing that can be positively done to improve life expectancy. I guess I'm just hoping to stop myself from worrying too much in the future if I have occasional lapses (i.e. once or twice per year)!

I think this website/forum is an excellent resource and reassurance for celiacs - it's great to know that the future is not all bleak for newly-diagnosed celiacs!

ianm Apprentice
ianm
Posted

Pharmer, This isn't the end of the world. You will feel much better on a gluten-free diet. It will take time but it is worth it. Eventually you will get used to the restrictions and you won't think much of it. Yes there are a lot of foods you can't eat but there are so many new things that I would never have tried otherwise so it really kind of evens out.

sdore Enthusiast
sdore
Posted

Hope this may help.

Last week I went to Vegas for my vacation. I was scared to death that I was going to be sick or hungry all of the time.

I only got a little sick on the last day. I ate a steak and thay couldn't promise anything on the seasonings.

The only advice I can tell you is to pack gluten-free snacks. Chips, chocolate, nuts..... This way when you arfe hungry you can eat,. I am sure that there are other easiy packable items somoene else can help you out woth. ( I am still new)

Be sure to ask at restaurants about seasonings. I order a plain burger with all the fixings and a baked potatoe all of the time. It is filling.

If you take a family trip this is easier because you can make you own food.

I know that this doesn't sound so good but it got me though Vegas.

NI know I don't know you but I feel that you are very stressed. I was too. Give it time and practice. I promise you will much better!

celiac3270 Collaborator
celiac3270
Posted
Also, I notice that some of the threads on this board discuss the paranoia that some people feel about injesting gluten. Perhaps I am missing something, but if the cancer risk is 40-100 times greater than average for celiacs that don't avoid gluten, but the average cancer risk is actually very low anyway, the risk to celiacs is still pretty low in absolute terms. So, surely the main reason for avoiding gluten is to avoid the disrupting and uncomfortable symptoms?

Sorry about all these questions!

Cancer is only one possiblity. Far more common is osteoporosis at an age you wouldn't normally get it (awhile ago there was someone on here who was about 30-years-old with osteo. from eating gluten long-term--before diagnosis, of course), vitamin deficiencies, malnutrition, anemia, and type 1 diabetes. If you visit the celiac.com site index and look for related disorders, there are long lists of what could happen if you don't follow the diet. And even if you don't come down with cancer, you could develop numerous other problems. It's not worth it and the short-term isn't everything. Some of us aren't even symptomatic.

Wandering Hermit Contributor
Wandering Hermit
Posted
  • Author

My wife had my kids in to see the doctor for some other stuff today, and she asked if they should have blood tests for celiac disease, given that I likely have it. His answer was "no way - they are not showing any symptoms." Apparently he also added that the tests are expensive.

KaitiUSA Enthusiast
KaitiUSA
Posted

They really should be tested whether they show symptoms or not. Since you have it there is a real possibility they could have it. Insurance will cover some of the tests I guess depending which lab you send it to.

I'm surprised the doctor was so closed to that considering you have that. I take it he was one of the doctors who is not well versed in celiac. He would know that with celiac you do not need to have symptoms. I would push for the tests or say you will go elsewhere to get them :D

celiac3270 Collaborator
celiac3270
Posted

Yes--most celiacs are asymptomatic and usually if one person has it, someone else in their family does, too

tarnalberry Community Regular
tarnalberry
Posted

wandering, I agree with Kaiti and celiac3270 - it's not worth the risk that they're merely asymptomatic (outwardly) at this point and still getting damage. the chance of having celiac if a first degree relative has it is 1 in 22. that's reason enough for the expense.

Rikki Tikki Explorer
Rikki Tikki
Posted

I agree, get the kids tested, you may want to find a new doc.

Guest Leidenschaft
Guest Leidenschaft
Posted
It can take many months and even years to have normal blood results.

I had a full panel of blood work done in Feb. 2005, (14 months gluten-free) I even went off ALL vit. supplements in Dec. 2004 to help determine what value I was getting from my diet... ALL my numbers were NORMAL!!! :D Even my "celiac numbers" were MUCH improved over my initial diagnosis!

Dr. recommended that I continue with Calcium supplements for life, and also could add Glucosamine/Chondroitin supplement for chronic joint and cartilage issues. I did resume these supplements after the blood work, including a 1000 mg Ester-C, however I'm finding them hard to swallow and have gotten out of the habit now. Was gagging on them every morning! Darn horse pills! :blink: Does anyone know of a good liquid supplement that I could hide in a glass of OJ or something?? I would like to keep my calcium supplements up, but just can't convince myself to swallow the handfull of pills every day! :unsure:

Thanks in advance! :D

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      Son's legs shaking

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    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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