Very Confused...

[krystal]

I have been a member on celiac.com for a VERY long time. About four years ago, I woke one morning and felt like I had a stomach virus. I was so nauseous and exhausted, but never vomited. I was certain it was a virus, until it lasted and lasted and lasted...

I noticed a correlation that it got significantly worse around the time of my monthly cycle, so I went to my OB-GYN. After ruling out pregnancy (duh), they sent me to my PCP. Months turned into a year of me being extremely nauseous, losing weight, being exhausted, picking up every cold/flu/infection known to man, as well as then my cycle became erratic and frought with heavy bleeding, not to mention insomnia, anxiety and ultimately depression.

Still being vain, I decided at one point in this to go on the South Beach Diet. Miraculously, in a few days I felt fantastic! I started suspecting it was diet-related and went down the path of celiac. By this time, I had significantly cleaned up my diet, but hadn't eliminated gluten completely. I went for a endoscope and they diagnosed me with "only" gastritis. I was to be on antacids, but every one of them gave me horrendous diarrhea.

I was told "conclusively" that I did not have celiac as my small intestine biopsy came out fine. I don't recall if I had the blood test or not.

It has now been four years, and since then I have gradually eliminated foods such as pasta, breads, etc. I have tried gluten-free diet and felt improved, but to be honest - without a diagnosis, people think you're just an attention-seeker when you're going so far out of your way to eliminate gluten "for the fun of it".

After a recent bout of feeling absolutely disgusting recently, I'm finally back at questioning whether I could possibly have celiac and what the chances are that they missed it?

Nausea seems to be my primary symptom, with fatigue, abdominal cramps, insomnia (yes, with fatigue - go figure) and anxiety/depression. It's like someone throws a switch and I'm not myself anymore. I am SO tired of not knowing what is wrong with me.

Add to this, I am now about 40 pounds overweight (I'm only 5'0") and borderline obese. The stupid thing is that as hard as I try, I cannot seem to eliminate these foods from my diet - I CRAVE THEM. I have a little, then I want so much it makes me ill.

Please offer your opinion on what to do.

Which is the most reliable test for celiac? If it's not the endoscope, what is?

If I were to deliberately eat a certain amount of gluten, what should I see happen?

Would this be a good enough indicator that it's celiac, or should I pursue a diagnosis?

Do the severity of symptoms when eating gluten fluctuate - can they be mild at one point and severe another?

Thanks for any and all effort you give in helping me.

[ravenwoodglass]

If you have been gluten light for a while chances are no test is going to be positive for celiac.

One thing you can do is to eliminate it totally for a couple of months and then challenge by eating gluten at least 3 times a day for a week. If gluten is an issue two things should happen, you should see a resolution of your symptoms off gluten and then when you add it back in your symptoms should reappear. It can take up to a week for the reaction to hit after you add gluten back in.

For me my symptoms did fluctuate for years, some would even disappear for a bit only to return later. It wasn't until the last 10-15 years or so of my illness that symptoms became constant. I can't say if the same is true for all.

Your symptoms do suggest celiac and one other thing you can consider is going with Enterolab. They can not diagnose you as celiac but they can tell you if your system is forming antibodies to gluten. Your body will not form antibodies to something that is not harmfull to you.

The biopsy could not have told you conclusively that you don't have celiac. There are false negatives in particular if you were not eating a full gluten diet. The biopsy can tell you for sure that you have it but not for sure that you don't. If you want to give the biopsy another shot you will need to be eating a full gluten diet for at least 2 to 3 months before the test is done and even then if the right area is not biopsied you will still get a false negative. There are also changes that can be seen before the villi are totally destroyed but not all doctors are up on them and some will state that if the villi are not totally destroyed yet that the test was negative.

[krystal]

If you have been gluten light for a while chances are no test is going to be positive for celiac.

One thing you can do is to eliminate it totally for a couple of months and then challenge by eating gluten at least 3 times a day for a week. If gluten is an issue two things should happen, you should see a resolution of your symptoms off gluten and then when you add it back in your symptoms should reappear. It can take up to a week for the reaction to hit after you add gluten back in.

For me my symptoms did fluctuate for years, some would even disappear for a bit only to return later. It wasn't until the last 10-15 years or so of my illness that symptoms became constant. I can't say if the same is true for all.

Your symptoms do suggest celiac and one other thing you can consider is going with Enterolab. They can not diagnose you as celiac but they can tell you if your system is forming antibodies to gluten. Your body will not form antibodies to something that is not harmfull to you.

The biopsy could not have told you conclusively that you don't have celiac. There are false negatives in particular if you were not eating a full gluten diet. The biopsy can tell you for sure that you have it but not for sure that you don't. If you want to give the biopsy another shot you will need to be eating a full gluten diet for at least 2 to 3 months before the test is done and even then if the right area is not biopsied you will still get a false negative. There are also changes that can be seen before the villi are totally destroyed but not all doctors are up on them and some will state that if the villi are not totally destroyed yet that the test was negative.

Ravenwood -

I am reading your signature, and I noticed that you have "early menopause". I am 35 and have hot flashes and my periods have gone from 5 days to 2 days of spotting, one of so-so bleeding, then another day of spotting. I am growing hair where no 35 year old woman wants to, and have other symptoms. My GYN wouldn't do the test, because she said my mother went through menopause at 58, mine should follow suit.

I'm going back to her in May, but I'd like to know if it's a common occurrence for undiagnosed celiac to manifest as early menopause?

I am not sure I can tolerate eating 4 servings of bread each day for four weeks. I might wind up divorced! LOL

[pincushion]

I have been a member on celiac.com for a VERY long time. About four years ago, I woke one morning and felt like I had a stomach virus. I was so nauseous and exhausted, but never vomited. I was certain it was a virus, until it lasted and lasted and lasted...

I noticed a correlation that it got significantly worse around the time of my monthly cycle, so I went to my OB-GYN. After ruling out pregnancy (duh), they sent me to my PCP. Months turned into a year of me being extremely nauseous, losing weight, being exhausted, picking up every cold/flu/infection known to man, as well as then my cycle became erratic and frought with heavy bleeding, not to mention insomnia, anxiety and ultimately depression.

Still being vain, I decided at one point in this to go on the South Beach Diet. Miraculously, in a few days I felt fantastic! I started suspecting it was diet-related and went down the path of celiac. By this time, I had significantly cleaned up my diet, but hadn't eliminated gluten completely. I went for a endoscope and they diagnosed me with "only" gastritis. I was to be on antacids, but every one of them gave me horrendous diarrhea.

I was told "conclusively" that I did not have celiac as my small intestine biopsy came out fine. I don't recall if I had the blood test or not.

It has now been four years, and since then I have gradually eliminated foods such as pasta, breads, etc. I have tried gluten-free diet and felt improved, but to be honest - without a diagnosis, people think you're just an attention-seeker when you're going so far out of your way to eliminate gluten "for the fun of it".

After a recent bout of feeling absolutely disgusting recently, I'm finally back at questioning whether I could possibly have celiac and what the chances are that they missed it?

Nausea seems to be my primary symptom, with fatigue, abdominal cramps, insomnia (yes, with fatigue - go figure) and anxiety/depression. It's like someone throws a switch and I'm not myself anymore. I am SO tired of not knowing what is wrong with me.

Add to this, I am now about 40 pounds overweight (I'm only 5'0") and borderline obese. The stupid thing is that as hard as I try, I cannot seem to eliminate these foods from my diet - I CRAVE THEM. I have a little, then I want so much it makes me ill.

Please offer your opinion on what to do.

Which is the most reliable test for celiac? If it's not the endoscope, what is?

If I were to deliberately eat a certain amount of gluten, what should I see happen?

Would this be a good enough indicator that it's celiac, or should I pursue a diagnosis?

Do the severity of symptoms when eating gluten fluctuate - can they be mild at one point and severe another?

Thanks for any and all effort you give in helping me.

Krystal,

Hi! I'm new here because I have Hashimoto's thyroiditis (an autoimmune disease of the thyroid) and adrenal faigue- probably caused by being hypo for so long without a diagnosis. I am now working on my thyroid and adrenal fatigue and have come across lots of evidence that many hypothyroid patients also have other auto diorders and one of the number one 's is Celiac disease. So I am seriously considering starting a gluten free diet. The reason that I wanted to respond to your post is that many of your symptoms sound so familar to hashi's and adrenal fatigue- mainly "being exhausted, picking up every cold/flu/infection known to man, as well as then my cycle became erratic and frought with heavy bleeding, not to mention insomnia, anxiety and ultimately depression." These symptoms are identical to what mine were, and have been mostly resolved on adrenal fatigue therapy (cortisol supplimentation with bioidentical cortisol (HC). I am seeing a specialist in Houston Texas now after 6 long years of suffering without a diagnosis. I am a member as well of another forum called Real Thyroid Help-those people have been a godsend for me. The link is here Open Original Shared Link I think you should definately check it out unless you have had all of these tests done and have come back high range normal:

TSH

Free T3

Free T4

Both Antibodies

RT3

Morning Cortisol

Ferritin

B-12

Iron

Potassium

Sodium

All Sex hormones.

I hope to find my way through gluten free as well. I am wondering if I should get the test or just try gluten free. Have a great day!

[krystal]

I think you should definately check it out unless you have had all of these tests done and have come back high range normal:

TSH

Free T3

Free T4

Both Antibodies

RT3

Morning Cortisol

Ferritin

B-12

Iron

Potassium

Sodium

All Sex hormones.

My medical doctor ran most (if not all) of these tests 4 years ago. About 2 years ago, I went to a functional medicine practitioner and she determined by symptomatology that I had adrenal fatigue as well as leaky gut. I went on an elimination diet, reintroduced things gradually (which is where I also began suspecting that preservatives are an issue for me as well), and I was put on probiotics, and several other supplements for digestion and more traditional supplements like B's and omega oils. The diet was also considered an anti-inflammatory diet.

I have improved greatly through that - a lot of the issues that I feel were caused by erratic nutrition during my acutely ill phase (of 2 years) got a lot better - the anxiety/insomnia, overwhelming nausea, as well as hair loss and amazingly short cycles. Now instead of constantly feeling sick, I only feel sick if I fall off the wagon and "cheat" more than once in a great while. It was during this phase of better eating an improvement when my medical doctor finally decided to test for celiac, etc. I think if they had tested when this first started and I hadn't modified my diet, the results would have been different.

I think it's humorous that they kept suggesting toast and crackers for my nausea!

Apparently nausea doesn't trigger any alarm bells for some medical doctors as possibly being a gluten issue. They found the gastritis and stopped looking after that. I kept telling them the gastritis was a result of the years of being sick, but no go.

[wildwood]

I find it so disturbing that an endoscopy is still used as the "gold standard" by so many physicians. Especially since damage can be so patchy. My daughter had GI symptoms for several years and each of the doctors she saw tried to convince her it was stress. She finally went to a GI and saw a nurse practioner. The NP decided to recommend an endoscopy and celiac panel. I still got the impression her supervising physician was convinced it was all in my daughter's head. The endoscopy came back negative/normal no inflammation or villi damage whatsoever. Her blood test results that came back a week after the biopsy were extremely positive, transglutaminase 233. The doctor called her back in to repeat the endoscopy and the second one came back negative also (they did the second one no charge of course). She then had gene test and does have DQ2 gene. Have you considered having the gene testing for celiac through Prometheus Labs? It does not provide a definite diagnosis, but if you do carry any of the genes it would help support a diagnosis. She has been dx'd celiac based on blood tests and dietary response. I hope more doctors come to realize the endoscopy is not fool proof. I am grateful the the nurse practioner truly listened to my daughter. Since going gluten free, my daughter feels so much better. I hope you are able to find the answers to what is causing your medical problems. In your case, since the endoscopy showed gastritis it indicates something is going on whether it be celiac disease or something else causing it. I wish you the best and hope you find the answers you need.

[ravenwoodglass]

Ravenwood -

I am reading your signature, and I noticed that you have "early menopause". I am 35 and have hot flashes and my periods have gone from 5 days to 2 days of spotting, one of so-so bleeding, then another day of spotting. I am growing hair where no 35 year old woman wants to, and have other symptoms. My GYN wouldn't do the test, because she said my mother went through menopause at 58, mine should follow suit.

I'm going back to her in May, but I'd like to know if it's a common occurrence for undiagnosed celiac to manifest as early menopause?

I am not sure I can tolerate eating 4 servings of bread each day for four weeks. I might wind up divorced! LOL

It is common for celiacs to not only go through an early menapause but also to have trouble concieving and to suffer more miscarriages. They don't know why this happens but they do note the association.

My doctor also refused to test to see if I was perimenapausal because of my age but for me it was definately menapause. The hot flashes ended soon after I went gluten free but even though my OB/GYN thought my periods might return it was too late for me. I did get one light period which prompted them to test for cancer but that was clear.

IMHO if you are sure you can not tolerate 2 to 3 months of gluten you have your answer and you do not need a doctors permission to be gluten free. Some like a definate doctor derived diagnosis because it can make it easier to prompt other family members to test. What convinced my whole family to test was the resolution of almost all my symptoms. Both of my children ended up showing up a low positive on blood testing which prompted my husband to also get tested. He was positive also.

[krystal]

It is common for celiacs to not only go through an early menapause but also to have trouble concieving and to suffer more miscarriages. They don't know why this happens but they do note the association.

My doctor also refused to test to see if I was perimenapausal because of my age but for me it was definately menapause. The hot flashes ended soon after I went gluten free but even though my OB/GYN thought my periods might return it was too late for me. I did get one light period which prompted them to test for cancer but that was clear.

IMHO if you are sure you can not tolerate 2 to 3 months of gluten you have your answer and you do not need a doctors permission to be gluten free. Some like a definate doctor derived diagnosis because it can make it easier to prompt other family members to test. What convinced my whole family to test was the resolution of almost all my symptoms. Both of my children ended up showing up a low positive on blood testing which prompted my husband to also get tested. He was positive also.

I think that I would really like to see a positive test. I don't know why the diagnosis would make a difference, but I think it would mentally. I don't believe I had the blood panel done. I honestly can't remember.

I have family members that have a lot of symptoms that could easily be celiac (and a host of other things, of course). I don't know if any of them would get tested anyway.

Fortunately, I have all the children I want so conception is not an issue. Menopause is not a problem for me, except for any added health risks that early menopause might add.

My problem right now is that my symptoms are progressing and now I'm blessed with constant painful (not excruciating) headaches when I eat poorly. I don't have them in the morning, but develop one within half hour of eating something I know full well I shouldn't be eating.

I think I will call my NP tomorrow. She has a food allergy and we've talked frequently about these issues. I am sure if I press the issue of the full blood panel for celiac, she will agree.

Is there any consensus on how long I should eat a gluten-rich diet before having the blood test?

[BestGlutenFreeWoman]

My young adult daughter was told by her gastroenterologist before her EGD test (to rule out/in celiac disease) to eat gluten for a month ("eat at least one slice of bread" a day). Hope this helps!