I Didn't Have Any Symptoms

[Green Eyes]

Okay, I'm a newbie here. I usually don't take the time to do the message board thing BUT this seems to be the place for me - so here goes.

I was diagnosed with Celiac Sprue and have eaten (attempted to) gluten free for 2 weeks. Here are my issues. I didn't have any major symptoms before I was diagnosed. It was found by chance - I don't doubt the diagnoses but there wasn't anything that I can say was caused by eating gluten.

What does that mean now? I've read the boards and many are having many days of sickness because of eating gluten. I accidentially had gluten (strawberries - I know better now) and I had an upset stomach and the cleansing of the system for about 24 hours. That's it!! I felt very fortunate after all the stories I read. Don't get me wrong, it was bad enough and I felt really bad, but I was able to continue to work and function normally.

The GI doctor said I had one of the worst cases she had seen. Her specific term was "your villa was just nubs." Does this mean my symptoms will never be that bad? Will it get worse the longer I go without gluten and then get a dose of it?

Okay, I think you've heard enough from me for the moment. Tell me what you think!!!

Jennifer

[Beth in NC]

You must of had SOME symptoms or they wouldn't have done an endoscopy? Why did they do that? Maybe you mean you didn't really have GI symptoms. I have dealt with chronic constipation for as long as I can remember, but never though it was a symptom of this. Three days gluten-free and I have not needed any extra fiber or herbs to get me going and I was taking stuff religiously twice a day!

Do you have any seemingly unrelated health problems?

[Ursa Major]

Hi Jennifer, and welcome to these forums.

I agree, you likely had symptoms. Where you anemic, had headaches, joint pains, depression, backache, couldn't think clearly, had gas, bloating, heartburn, acid reflux, rashes, weight loss, weight gain, thyroid problems, hair loss, sinus problems, allergies, deficiencies (low iron, vitamin D, vitamin K, calcium, magnesium, B12, B6), osteopenia or osteoporosis, fibromyalgia, low energy, very emotional, angry outbursts out of nowhere, crying spells, schizophrenia, bi-polar .................. (ok, there are ONLY another 200 or so) or other symptoms? If you said yes to even two or three of those, then you absolutely HAD symptoms. Those are typical.

[Jenny (AZ via TX)]

What do you mean by "strawberries"? I thought all fruit was gluten-free.

[ShayFL]

Strawberries can be grown in wheat "hay". There is a slight chance of cc, but not everyone reacts. I think if you wash them very good it is no worry. Or look for FL strawberries...it doesnt get cold enough here for them to use that wheat as insulation.

[Green Eyes]

Okay, let me clarify. I had the endoscopy because I am anemic - have been for years. That was the only reason the doctor wanted to follow thru with the test while doing the colonoscopy. There were no other red flags. Any problems I was having were so mild I thought nothing of them. Yea, I had gas but who doesn't. I have had issues with constipation since I stopped smoking in 1992, thought nothing of it.

I had a colonoscopy because the gyn was trying to rule out problems I was having to avoid a hysterectomy (still having one). Turns out I have a prolaspe uterus (I know that's another story).

So to clarify, there were symptoms, but nothing that would have caused me to seek out a doctor. I feel fortunate to have found out what was going on. But how did all that damage happen without bigger issues?

Jennifer

[Fiddle-Faddle]

I'm a "silent celiac," myself--my only obvious symptoms were acid reflux and autoimmune thyroid disease--but those weren't obvious enough to trigger anyone in the medical field to look for celiac.

It took the rash from hell (DH--it looked like REALLY bad poison ivy, oozing, blistering, itching, burning, and it was totally symmetrical)) to get properly diagnosed.

And yes, I had had frequent bloating, mild constipation and mild loose stools, but I didn't realize I HAD them until they went away on the gluten-free diet.

I also have a prolapsed uterus, but according to my OBGYN, it's no cause for concern, let alone a hysterectomy. Is it possible you should get a second opinion on that hysterectomy?

[Beth in NC]

A great site for support re: hysterectomies is www.hystersisters.com I had one three years ago and they helped me prepare greatly. I had a prolapsed uterus, but the reason they removed the uterus was because of a fibroid...that caused the prolapse due to the weight of it. I would get a second opinion though...it isn't a piece of cake. At least it wasn't for me.

I didn't think I had symptoms of Celiac till I began to research it. It might be when they test your blood for the different fat soluble vitamins that you are low on several things.

[home-based-mom]

Okay, let me clarify. I had the endoscopy because I am anemic - have been for years. That was the only reason the doctor wanted to follow thru with the test while doing the colonoscopy. There were no other red flags. Any problems I was having were so mild I thought nothing of them. Yea, I had gas but who doesn't. I have had issues with constipation since I stopped smoking in 1992, thought nothing of it.

I had a colonoscopy because the gyn was trying to rule out problems I was having to avoid a hysterectomy (still having one). Turns out I have a prolaspe uterus (I know that's another story).

So to clarify, there were symptoms, but nothing that would have caused me to seek out a doctor. I feel fortunate to have found out what was going on. But how did all that damage happen without bigger issues?

Jennifer

It sounds like you had plenty of symptoms and no one - including you - connected the dots. LOTS of people don't have gas, for instance. But there are people who have few if any symptoms but severe intestinal damage. There isn't a total correlation between symptoms and amount of damage.

I also have a prolapsed uterus, but according to my OBGYN, it's no cause for concern, let alone a hysterectomy. Is it possible you should get a second opinion on that hysterectomy?

Here is info on hysterectomies and prolapsed uterus.

Open Original Shared Link

[GFinDC]

Well, anemia is a symptom of celiac. Malnourishment, or malabsorbtion of nutrients is also. Those nubbies in your small intestine are supposed to be little finger like projections that absorb nutrition for you. They not worky so well when reduced to little nubbins!

Secondary diseases are thought to be caused when the gluten proteins get through the intestinal barrier without being broken down correctly. They are not uncommon and in time you could develop one if you continued on eating gluten. I developed lactose intolerance over 10 years ago but didn't develop thyroiditis until last fall. So, it can take some time for the damage to show up in other auto-immune diseases.

Go gluten-free and get nubbin free!

[Green Eyes]

I finding out just how wonderful this bunch is!!!

I might add that I am 13 days gluten free with only one little mishap. I just worry that I won't recognize the symptoms and don't want to overlook something. Like eat something with gluten and not know it because my symptoms just aren't that bad. I did know it the one time, but will my symptoms always be the same, get worse, or not be as bad?

After my initial 24 hours hours of crying, crying and did I mention crying - I buckled down and accepted my lifestyle (even though I didn't fully grasp it at the time). That's just my personality. Doesn't matter what I have to deal with, just want to know what it is and then I can handle it (that is after my acceptance time).

Now back to the hysterectomy. I'm the one pushing the doctor. I'm tired of dealing with this. He (the doctor) has put this off to be certain. I still have the constant cramping and it feels like something is going to fall out with all the pressure I feel. That sucker is coming out on 8/12 and I'm happy about it!!! Not that I look forward to surgery but I'm at the point that I want it out of there, don't plan on using it again and it is causing way to many problems.

In the end, this is the doctor that referred me for the colonoscopy doublechecking my symptoms which is why they found the celiac.

Jennifer

[Beth in NC]

I finding out just how wonderful this bunch is!!!

I might add that I am 13 days gluten free with only one little mishap. I just worry that I won't recognize the symptoms and don't want to overlook something. Like eat something with gluten and not know it because my symptoms just aren't that bad. I did know it the one time, but will my symptoms always be the same, get worse, or not be as bad?

From what I've been told, they get worse. It may not be that way for everyone, but most of what I have read has been that reactions tend to worsen over time, because by THAT time, it is SO foreign to the body.

After my initial 24 hours hours of crying, crying and did I mention crying - I buckled down and accepted my lifestyle (even though I didn't fully grasp it at the time). That's just my personality. Doesn't matter what I have to deal with, just want to know what it is and then I can handle it (that is after my acceptance time).

There is a definite grieving process! I was the same way...the day I was diagnosed, I promptly went home and had banana bread for lunch! But while I was in the doctors office, I think my jaw was on the floor most of the visit. I was not expecting this AT all. Being I used to be a nurse, I knew what it meant. It was like...you know when people say their life flashes before their eyes when they think they are gonna die? I had pizza/donuts/homemade whole wheat bread slathered in butter, and stuff like THAT flashing before MY eyes!!

Now back to the hysterectomy. I'm the one pushing the doctor. I'm tired of dealing with this. He (the doctor) has put this off to be certain. I still have the constant cramping and it feels like something is going to fall out with all the pressure I feel. That sucker is coming out on 8/12 and I'm happy about it!!! Not that I look forward to surgery but I'm at the point that I want it out of there, don't plan on using it again and it is causing way to many problems.

I hear ya!! Are they going to have to do an abdominal cut? Or go at it the "easier" way? Mine was abdominal which made it harder...well, maybe it was harder also because they tightened things up down there and I had a catheter going into my bladder from my abdomen for 10 days! But I got through it and I'm glad now. It definitely has its benefits in the marriage department, not having to worry about BC anymore. If you have any questions, feel free to send me a private message or what ever you feel best about.

In the end, this is the doctor that referred me for the colonoscopy doublechecking my symptoms which is why they found the celiac.

Jennifer

[Fiddle-Faddle]

Just thinking--if your cramping eases up over the next couple of weeks, you might want to delay or even cancel that hysterectomy.

My cramping turned out to be intestinal--it was because of gluten, not because of my uterine prolapse. And it was WAY worse at ovulation and during my period, so I was sure it was a "female" problem.

It wasn't.

Either way, I hope you feel better soon!

[Green Eyes]

Thanks Beth, my hysterectomy will be the "easier" kind. That of course could change during surgery, but all appears fine and with a little prayer I plan on being good to go in 4 weeks.

Fiddle Faddle, I have actually had more cramping in the last couple of days. There is also more details which I won't share for the world (way to my information). But without a doubt I am convinced surgery is my only option.

I did find out thru blood test today that my 11 year old son is negative. I was pretty sure he was but I wanted that confirmation.

What concerns should I have with actually being in the hospital and staying gluten free? My GI doctor actually suggested having my husband bring me food from home. That is possible since we live less than 10 minutes away from hospital. Although I'm not real happy with the hospital, I think enough of the doctor to overlook that. How knowledgeable should a nurse working in a hospital be?

Jennifer

[CCR]

I was also shocked by my diagnosis, having only anemia as a symptom and not having celiac in my family. I have been off gluten for 6 weeks and have now had two accidental glutenings. I'm not sure what caused the first one, but I do know what caused the second (I ordered take-out from a Thai restaurant at which I had had many successful lunches...I guess take-out is riskier because I didn't get to speak with my regular waitress...sigh). I used to eat gluten with no concerns but now my reactions are quite severe, and I am afraid that future accidents will cause ever worsening reactions. All I can do is be very careful, I guess. The fact that I now have reactions makes me depressed. I was being careful anyway but now I have to be afraid, too. It's starting to really sink in now, what having celiac means. My 13 year old had his biopsy Wednesday and we are awaiting his results. I dread seeing this happen to him once he gives up gluten. My 17 year old does not have the genes and my 15 year old will be tested soon. I'm glad, Green Eyes, that your son is negative. Did they test him for the genes?

[Green Eyes]

Thanks CCR,

Your information was exactly what I was looking for. Not that I look forward to the results of eating gluten, but I like to know what I'm in for. Half of my battle is know what to expect!!!

My son has only had the blood test. He has no signs at this point. I have battled on having him tested to see if he has the gene. At this point, I don't think I want to do that. Am I wrong in not looking in to this? The GI doctor said it was an option but I didn't ask for any details.

Jennifer

[home-based-mom]

My son has only had the blood test. He has no signs at this point. I have battled on having him tested to see if he has the gene. At this point, I don't think I want to do that. Am I wrong in not looking in to this? The GI doctor said it was an option but I didn't ask for any details.

Jennifer

If testing is an affordable option, I think you should go for it because then you will know for sure whether or not your son is likely to develop the disease later on. Also, it is not at all unusual for blood tests to show false negatives, even more so if the complete panel was not run.

What concerns should I have with actually being in the hospital and staying gluten free? My GI doctor actually suggested having my husband bring me food from home. That is possible since we live less than 10 minutes away from hospital. Although I'm not real happy with the hospital, I think enough of the doctor to overlook that. How knowledgeable should a nurse working in a hospital be?

From what others have posted in other threads, your GI has given you excellent advice. It appears for the most part that hospital nurses, dietitians, and cafeteria staff are all basically clueless about gluten free eating.

[CCR]

Green Eyes, I'd probably do the genetic test so that I could either forget about it or monitor him carefully, depending on the results. I know that my daughter felt great relief when she learned she didn't carry the gene. My other son is very fearful of needles and I will hold off until he needs other bloodwork done this fall. Then he will be tested, too.

I think it's lousy that a hospital can't provide gluten-free food for its patients! Really disgraceful, in fact.

[Ursa Major]

I think it's lousy that a hospital can't provide gluten-free food for its patients! Really disgraceful, in fact.

I don't think any hospital ever refuses to provide gluten-free food to their patients. The problem is that they CLAIM that food is gluten-free, when they don't have much of a clue what that means.

I've read of people who said their food needed to be gluten-free, only to be served food with crackers, or toast in the morning, because the dietician didn't realize that white flour is wheat!

The risk of cc in those kitchens is too high as well, especially if they don't understand, and are therefore not careful.

Of course, SOME hospitals will be perfectly safe. But how do you know that before you go in?

[Green Eyes]

So what is involved in genetic testing? Is it just a blood test?

It is amazing to me that a restaurant can be more aware of gluten free food than a hospital!! I will certainly have my own food from home while in the hospital. At least it is for only one day (or that is the plan).

Thanks again for the advise!!!

Jennifer

[Ursa Major]

So what is involved in genetic testing? Is it just a blood test?

It is amazing to me that a restaurant can be more aware of gluten free food than a hospital!! I will certainly have my own food from home while in the hospital. At least it is for only one day (or that is the plan).

Thanks again for the advise!!!

Jennifer

You can have genetic testing done through Open Original Shared Link (they have it done by the Red Cross), and it is a cheek swab.

If done through the doctor's office, I believe it is a blood test.

[Fiddle-Faddle]

I don't think any hospital ever refuses to provide gluten-free food to their patients. The problem is that they CLAIM that food is gluten-free, when they don't have much of a clue what that means.

When I was admitted to the hospital in 2006 with a post-surgical reaction to the painkiller (endocet, for anyone interested--evil stuff, to be avoided at all costs), the hospital told me that they couldn't guarantee ANYTHING was gluten-free, so they wouldn't bring me anything to eat.

[Green Eyes]

After discussing genetic test with my son, he has agreed (willingly) to be tested but prefers to wait a little while. Not sure what that means, but I think he wants to know just as much as I do. So I am going to give it some time and then push the issue. By then I should have a better handle on my eating as well.

Jennifer

[CCR]

Sounds like a good plan. I didn't know about the cheek swab option. I wonder if my insurance would cover that. I have to look into it for my needle-phobic 15 year old. My daughter's genetic test was a blood test.

Carin

[uvm87]

I just got my blood work back and everything is positive so I am waiting for the biopsy to confirm. My reactions are also very mild or subtle. Since I still need my biopsy, I ate wheat cereal and pizza yesterday and felt fine. Everyone says that their reactions are "more severe" now but what does "more severe" really mean?

Thanks so much! I hope your 15 year old is negative. After my biopsy, I will need to get my 8 and 11 yr old girls tested. I am ok with having to be gluten-free but think it must be so hard for kids.

I was also shocked by my diagnosis, having only anemia as a symptom and not having celiac in my family. I have been off gluten for 6 weeks and have now had two accidental glutenings. I'm not sure what caused the first one, but I do know what caused the second (I ordered take-out from a Thai restaurant at which I had had many successful lunches...I guess take-out is riskier because I didn't get to speak with my regular waitress...sigh). I used to eat gluten with no concerns but now my reactions are quite severe, and I am afraid that future accidents will cause ever worsening reactions. All I can do is be very careful, I guess. The fact that I now have reactions makes me depressed. I was being careful anyway but now I have to be afraid, too. It's starting to really sink in now, what having celiac means. My 13 year old had his biopsy Wednesday and we are awaiting his results. I dread seeing this happen to him once he gives up gluten. My 17 year old does not have the genes and my 15 year old will be tested soon. I'm glad, Green Eyes, that your son is negative. Did they test him for the genes?