Opinions Please!

[Curious9]

Hello everyone,

 

I apologize for the length of this post, I have tried my best to condense it. For anyone who has the time, some input would be very much appreciated!

 

2 weeks ago, I finally got up the never to talk to my doctor about my chronic GI problems, which I’ve been experiencing for over a year and have been getting progressively worse, to the point where it is very uncomfortable to go to school or work. Among other things, she suggested eliminating gluten. I have been gluten free for a week and within the first day, my GI symptoms were at least 80% resolved! My other possibly gluten related symptoms are not however, and I have been experiencing what must be awful withdrawal.

 

I will be going back to the doctor next Friday. I always get nervous and hold back, as I feel I must be being dramatic. So I was just looking for some opinions. Do you think my symptoms could be consistent with celiac/gluten intolerance? Should I look further into this?

 

Here is a summary of my symptoms throughout my life, I am now 24 years old.

 

I was a very colicky baby and a very constipated toddler/young child. I developed severe asthma at 4 was constantly ill, including oral thrush infections. I “grew out” of my asthma at some point during childhood. At 9/10 I started having constant, bad headaches. I was sent to the eye doctor and for a test for various environmental allergens with a few minor findings. Finally I was sent to a neurologist and put on medication. I’ve had frequent nosebleeds throughout my life. For one period of time, nearly every single day. At 19 I developed severe carpal tunnel in both hands. I had a nerve conduction test done my result were like that of an 80 year old. I’ve had unexplained numbness in my leg and arm for long periods of time.  I have been exhausted for at least the past 5 years. I’m often light headed, my heart pounds (particularly after eating), and my head spins. I’ve also been insanely thirsty for the same amount of time. My doctor said this was probably from the antidepressants I was on. But during the year I was off of antidepressant the insane thirst did not go away. I go from not being hungry to famished very quickly and get very dizzy and irritable. I also often feel like I have low blood sugar. I can’t tolerate cold. My nailbeds and lips often turn blue. I’ve had recurrent breakouts of pityriases (a skin fungal infection) for the last decade or so, that will disappear with treatment but reappear somewhere else shortly thereafter.  My period has always been irregular, with skipped periods for no apparent reason. I’ve often had various GI complaints.  I’ve been anxious my whole life and have had many panic attacks. At 12 I began suffering noticeably from severe depression and social anxiety, and began developing anorexia. I’ve been hospitalized because of anorexia 3 times, at 15, 18, 22. Because of this, I have often attributed my various symptoms to my eating disorder. But, I relapse very rapidly, such that I am only acutely ill for short periods of time. For the most part, in between my relapses, I have been at a normal weight, and healthy, and all these symptoms have persisted and are usually worse! For a long time I thought my symptoms were long lasting effects of having contracted mono at 19. Another theory I’ve had is that I’m very sensitive to the sun.  I’ve also tried to convince myself that it is just normal to feel this way. I was hospitalized because of anorexia for the last time a year and a half ago, weighing about as much as a 9 year old. I was hospitalized for 6 months, and since being discharged a year ago I have been free of eating disorder symptoms, eating a balanced diet, not cutting out any calories, or food groups, and all around, in solid recovery. I felt ok, but gradually I started to feel more and more ill. One of the main reasons for my last relapse was because I felt so exhausted and s$#&ty all the time. I’m fairly confident that my symptoms are not caused by my eating disorder history, or one would expect them to improve with time, rather than worsen. This time I will not be giving up, I want to get to the bottom of this. I want to live, and without so much suffering.

 

I’ve had some minor blood work done at various points, the last time being February, with few abnormal findings; somewhat low iron and vitamin D. By the time I go back to the doctor, I will be 2 weeks gluten free. Will there be any point in getting tested for celiac disease/gluten intolerance? I really don’t want to go back to eating gluten, but I supposed soon rather then later would be better. Is it worth it? Is there anyone who didn’t get tested who now regret it? Are gene tests readily available?

 

Thanks everyone!

 

[tommysmommy]

You have every reason to suspect celiac disease - all of your lifelong symptoms point to it as a serious possibility - and your fast improvement gluten free certainly supports it. Please dont wait for your followup appointment, call your doctors office immediately, explain the improvement and ask for them to order a celiac blood panel right away...if you wait two weeks, the results may not be accurate - but 1 week may be soon enough. A formal diagnosis is good to have - and will be taken seriously. It sounds like you are experiencing the awakening so many of us have had - there is a reason for your poor health. Good luck. Be tough with your doctors... Start with the bloodwork right away!

[GF Lover]

You said:

 

my GI symptoms were at least 80% resolved!

This is a good sign that gluten may be a problem for you.

 

My other possibly gluten related symptoms are not however, and I have been experiencing what must be awful withdrawal.

Withdrawal can last up to 3 weeks.

 

At 9/10 I started having constant, bad headaches.

Can also be a symptom of Celiac.

 

At 19 I developed severe carpal tunnel in both hands.

Autoimmune Diseases cause inflammation.  This may solve the Carpal Tunnel issue, it did for me.

 

I have been exhausted for at least the past 5 years. I’m often light headed, my heart pounds (particularly after eating), and my head spins.

This is not uncommon with undiagnosed Celiac Disease.

 

I go from not being hungry to famished very quickly and get very dizzy and irritable. I also often feel like I have low blood sugar.

Also not uncommon.

I can’t tolerate cold. My nailbeds and lips often turn blue.

This is Reynauld's Syndrome, Is often secondary to an Autoimmune Disease and Celiac is an Autoimmune Disease.

 

My period has always been irregular, with skipped periods for no apparent reason.

There is a connection between fertility issues and Celiac Disease. 

 

I’ve been anxious my whole life and have had many panic attacks. At 12 I began suffering noticeably from severe depression and social anxiety.

Mood disorders often go hand in hand with Autoimmune Diseases.

 

For a long time I thought my symptoms were long lasting effects of having contracted mono at 19.

Celiac Disease can be triggered by an illness.

 

somewhat low iron and vitamin D.

This in itself will cause fatigue and may be low because of malabsorption  issues 

 

Will there be any point in getting tested for celiac disease/gluten intolerance? I really don’t want to go back to eating gluten, but I supposed soon rather then later would be better. Is it worth it? Is there anyone who didn’t get tested who now regret it? Are gene tests readily available?

If you want to be tested for Celiac Disease you need to be eating gluten.  The blood test is often followed by and Endoscopy Procedure to look for damage.  It is up to you to decide if it is worth it.  Gene tests can be ordered by a Doctor or purchased independently.  Having a Celiac gene does not necessarily mean you have Celiac.

 

You may decided to go completely gluten free.  If you do, give it a good three months to decided if it is for you.

 

Good Luck with whatever you decide.

 

Colleen

[1desperateladysaved]

I’ve had some minor blood work done at various points, the last time being February, with few abnormal findings; somewhat low iron and vitamin D. By the time I go back to the doctor, I will be 2 weeks gluten free. Will there be any point in getting tested for celiac disease/gluten intolerance? I really don’t want to go back to eating gluten, but I supposed soon rather then later would be better. Is it worth it? Is there anyone who didn’t get tested who now regret it? Are gene tests readily available?

 

Greetings, Curious,

 

Sorry to hear that you have suffered like this.  I have high hopes that you are on the right track with checking for gluten intolerance/celiac.  My functional medicine nurse told me that the first symptom of celiac is often mildly low iron.  Vitamin D is often low too.  Of coarse other things do cause these problems.  If you were to desire testing, now would be the time.  I think you may have to eat more gluten bbefore having an antibody test.  The antibody levels may be high enough, or may not be.  My functional medicine nurse says many antibodies die off after about 4 days..

 

There are some reasons you may want to be tested.  It tends to prevent cheating, or not taking the diet seriously.  It helps those around you to know you have a valid disease. There could be tax advantages.   However, when it came my turn to test, I was already 3 weeks gluten free and did not think it would be ethical for me to consume gluten for the test.  Instead, I did  a genetic test.  I took the results to my MD did she diagnosed using my symptoms and talks about the change in symptoms after going gluten free.  My genetic test was as positive as it could get since I had 2 DQ2 and 2 DQ8.  I think it is unusual for an MD to diagnose this way.  Since I have learned also that you can have the genes, but not have the disease.  Still, with the test and symptoms concurring, it helps.

 

Since the test I have found many other things that seem convincing that I have celiac.  My nutrient levels were trashed although my diet nutrients were high and I took high quality supplements.  I had intolerances to nearly everything I was eating.  My adrenal glands were taxed.  I had lived with symptoms for 30 years.  I noticed the major brain fog when it cleared up!  I hadn't really had a diarrhea problem, as many do, but after a while on the diet, I reacted with diarrhea when I got cross contamination.

 

To gage progress, I had a repeat nutrient test in June.  My vitamin B level had gone from kaput to high!  Other nutrients registered adequate.  I figure that if my villi are healing, the nutrient levels would have improved and they did.

 

At first, my family thought this was a new phase in my unusual dieting.  I had long since cut out sugar and junk foods.  Now, they see what a change this has made in me mentally, physically, and socially.  One friend commented that I glowing!

 

Whatever you decide, I wish you well in it. Happy healing to you ***.

 

D

[Curious9]

Thank you all so much for your responses!

 

Any time I try to talk to my family about this, they are unresponsive or change the subject. I understand that it scares them because of my eating disorder history, but I really need to get to the bottom of this, and I could use their support! For this reason, I would like a definitive diagnosis, but I am also afraid that my blood results will come back negative and then they really won't believe me! But then again, it really isn't about them, it's about my health!

 

I will call my doctor's office Monday morning when they open, and try to get my appointment moved up to either that afternoon or Tuesday morning. Hopefully my doctor will be more understanding than my family!

 

If my blood results come back negative, do you think it would be worthwhile to push for an endoscopy? Without going into too much detail, as it's quite embarrassing, I have many symptoms of malabsorption. I still follow the meal plan that I was discharged from the hospital with but I often end up eating more as I am hungry. I am 5'4 with a bmi of 20 and usually eat around 2500 calories a day. Which I would think is plenty for someone my size. I do no exercise, I used to run (which I love), but I have been too tired to do so over the past couple months. I'm always hungry! Can non celiac gluten intolerance damage intestinal villi as well? Is it common to react more strongly to gluten following a period of being gluten free?

 

I think it might also be a good idea for me to have my blood sugar, liver, pancreas and gallbladder levels tested.

 

Thanks again everyone!

[notme]

your story is eerily similar to my own - lolz - pityriasis <you are the only other person besides me who i ever heard had that.  i thought the doctor made up the malady because it was on my arm PITS.  i was diagnosed as a last resort before landing in the hospital for malnutrition....  get tested   good luck!

[Curious9]

Hehehe! I can see how you would think that was made up! It would be a good name for a pit condition. Perhaps it is related to gluten intolerance then. I will be trying my best to get in to see my doctor tomorrow. Thanks for the reply!

[nvsmom]

Wow, you had many of the same symptoms as me. I'm glad you are getting tested. The tests are: tTG IgA and IgG, DGP IgA and IgG, total serum IgA (control test), and EMA IgA.

 

I think you should get your thyroid checked too. Coldness, fatigue, GI issues, irregular menstruation, and some other things you listed are signs of hypothyroidism (which is pretty common to have with celiac disease).  To get that tested, ask about TSH (for those with thyroid issues it should usually be near a 1 despite the different reference ranges), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab (which can help tell you if your thyroid is under autoimmune attack.

 

 

Good luck!

[kareng]

At the. International Celiac Disease Symposium a few weeks ago, most of the doctors said they only test with TTG IGA and total serum IGA. But the problem with this is, if the total serum IGA is low, you have to go back and get the TTG IGG done. So maybe get them all done at once? Only about 5% have a low Serum IGA, so I guess, by the odds, , it's more cost effective to just do the 2 then do the third if needed.

[Curious9]

Thanks for the replies!

I shall get my thyroid checked! as for the celiac blood tests, I live in Canada, and I'm hoping my insurance will cover it. If not, it will be money well spent anway! 

[nvsmom]

At the. International Celiac Disease Symposium a few weeks ago, most of the doctors said they only test with TTG IGA and total serum IGA. But the problem with this is, if the total serum IGA is low, you have to go back and get the TTG IGG done. So maybe get them all done at once? Only about 5% have a low Serum IGA, so I guess, by the odds, , it's more cost effective to just do the 2 then do the third if needed.

 

I think another problem is that some people test positive in the DGP tests and not the tTG tests. We seem to have a minority around here that this has happened to. I understand not running the EMA as that one is triggered by ongoing damage and isn't often positive if the tTG is not.

 

Good luck with the testing! I'm in AB, and they would only run the tTG IgA and serum IgA out here ( they run the EMA if your tTG is positive). My docs hadn't even heard of the DGP. 

[choralkate]

After weeks of abdominal pain and a candida sufferer as well, the tests above did not prove Celiac. Yet, once I took gluten out, 85-90% healed! I had an ice cream last night and the belly pain is back this morning. Can you have Celiac and lactose issues without the blood test results being positive?

[kareng]

After weeks of abdominal pain and a candida sufferer as well, the tests above did not prove Celiac. Yet, once I took gluten out, 85-90% healed! I had an ice cream last night and the belly pain is back this morning. Can you have Celiac and lactose issues without the blood test results being positive?

 

 

Lots of people have lactose issues - with or without Celiac.   

[Curious9]

Hello! So I went to see my doctor. She is ordering the celiac blood panel. I'm not sure which blood tests this will include. I have to eat gluten for 2 weeks as I have been gluten free for 11 days. Do you think that will be long enough?

I'm feeling rather upset as I don't feel I was taken very seriously. My doctor is very nice, but her explanation for my other symptoms is that some people are just more sensitive to their bodies. I hope this is not the case! I'm so tired and light headed. I don't want to feel ill my whole life!

[kareng]

Hello! So I went to see my doctor. She is ordering the celiac blood panel. I'm not sure which blood tests this will include. I have to eat gluten for 2 weeks as I have been gluten free for 11 days. Do you think that will be long enough?

I'm feeling rather upset as I don't feel I was taken very seriously. My doctor is very nice, but her explanation for my other symptoms is that some people are just more sensitive to their bodies. I hope this is not the case! I'm so tired and light headed. I don't want to feel ill my whole life!

 

 

Maybe get her to check thyroid and for anemia, too?

[Curious9]

She checked my thyroid and iron stores in March. She said my thyroid was normal and my iron stores were somewhat low. I think she will do some more blood work when I go in for the panel. But routine blood work never seems to yield much! I feel my celiac panel will come back negative, and then I won't know where to go from there!

[nvsmom]

She checked my thyroid and iron stores in March. She said my thyroid was normal and my iron stores were somewhat low. I think she will do some more blood work when I go in for the panel. But routine blood work never seems to yield much! I feel my celiac panel will come back negative, and then I won't know where to go from there!

 

I would get copies of your old thyroid labs if possible. I was told for years and years that my thyroid was normal, and I trusted them, but once I saw the labs and did some research into ideal ranges and such, I realized that they were.... well, completely wrong.

 

Thyroid tests to get are TSH (near a 1) free T4 and free T3 (in upper 50-75% range of your lab's reference range), and TPO Ab. Request those specifically... or just check off the boxes on the lab requisition like I've done.  LOL Good luck.

[tommysmommy]

So glad you went to see your doctor. unfortunately, doctors dont always comprehend all the connections - but those of us living with it do! All say you should be eating gluten for an accurate test but you may be within the window still (why cant they just do the bloodwork today, its like a $350 test... btw - there may be a connection with celiac and eating disorders - the gut/brain connection is sttrong. Stay positive. Lots of help here and on facebook and twittet too (tons of bloggers too). You are not alone!

[Curious9]

Thanks for the responses!

 

Trying to stay positive but it's hard. My family is telling me to go see my psychologist, they also think it's in my head.

 

My doctor said she is testing me, because if I have non celiac gluten intolerance opposed to celiac disease, I will be able to eat some gluten. Basically I won't need to be as careful, because gluten isn't actually causing me any health problems, it's just causing me GI symptoms. Is this true?

Secondly, she said there is nothing to support gluten withdrawal in western medicine. But, I have read scholarly article on how gluten breaks down into several opioids. What are other peoples opinions on this?

 

I was so nervous yesterday, I didn't ask which thyroid test she did in march, and what the level was. I found blood work from March 2012 and the normal sTSH range is indicated as 0.35-5.0. From researching online, I have found that the generally the new upper range accepted is 2.5, max 3, with optimal range being between 1 and 2. At the time of this blood work I was in severe starvation and very underweight. So this blood work is not very indicative of my present state. However, my sTSH level was 3.05. This seems a bit odd to me, because, from everything I've read, anorectics generally present with LOW TSH. Hmm.

 

My doctor said the test should be around $120, so maybe it doesn't include every test. When I go for the test, I think I shall push to have my sTSH levels retaken, and for them to test for thyroid antibodies, as well as my B12, vitamin D, and Mg levels. And then I will request a copy of my blood work. It would be so much easier if you could just go to the lab and say, please test me for this, this, and this. Cut out the middle man! If I reach a dead end, I may have to get a second opinion. Luckily, I know someone who was diagnosed with celiac disease over 10 years ago, and her doctor is a bit of an expert. I was also wondering, have people encountered less resistance with younger doctors vs older doctors?

 

Thanks so much everyone!

[kareng]

I was just at the International Celiac Disease Symposium.  They were saying that they really don't know anything definite about NCGS.  They have a few preliminary studies.

 

One found that NCGS patients that reacted well to a gluten-free diet might actually have FODMAP issues. Basically, this is an issue with breaking down large sugar molecules.  As wheat is a higher FODMAP food, people felt better.  When they added wheat back in, but kept the total FODMAP load low, the patients still did well.

 

They also think that the NCGS patients might be reacting to a different part of the wheat, but they have no tests for that currently.

 

And of course, some NCGS might just be Celiac patients that were not diagnosed properly - early stages, tests performed or read incorrectly, etc.

[Curious9]

If my blood test comes back negative, I guess I will just go back to gluten free anyways, as I know at least my digestive system feels a hell of a lot better without it, and see, after several months, whether my other symptoms are improving as well.

Thank you!