Feel like I'm going insane

[pavlovcat]

I know it's a long shot but I'm hoping someone else out there has a similar story and can provide some encouragement or guidance.

So I'm diagnosed with Celiac despite a negative biopsy.  My gastro made the diagnosis based on being positive for the celiac gene and having elevated levels on the TTG test.  A decade ago I also tested positive two times on the TTG but had negative biopsies.  At that time the gastro I was seeing just shrugged and diagnosed IBS.  Fast forward to 2 months of being gluten free and having my symptoms continue to worsen and I happened upon someone who mentioned Graves disease.  Not knowing what it was, I looked it up and had a lot of the symptoms (eye pressure, chronic diarrhea, palpitations, weight loss, anxiety, etc.)  I asked my PCP to order a full thyroid panel, which showed normal thyroid levels but elevated thyroid antibodies (not sky high, but higher than the normal range).  He said I have Hashimoto's, then told me that wasn't the cause of my problems because the antibodies weren't high enough for me to be having any symptoms, and once again gave me the "you're just depressed and you have IBS" speech.  I'm sick of being anxious all the time and absolutely am struggling with depressive moods the last few months after 2 years of worsening symptoms with no relief and no answers, so I accepted his prescription for a low dose anti-depressant.  I also scheduled a second opinion with a new doctor.

There's a part of me that wants to believe my PCP.  Just take the pill every night and stop searching for answers and work on my mental health.  But I feel like nothing is adding up. I have a lot of the symptoms of Graves, but he diagnosed Hashimoto's and then told me the symptoms I was experiencing were all psychosomatic and were not related to the Hashimoto's.  I have a lot of symptoms of celiac, but being gluten free isn't helping (and yes, I am being super careful - not eating out, replaced kitchen utensils and equipment, I tried dairy free for 2 weeks and saw no improvement, I avoid gluten-free products with lots of gums in them, etc.).  I'm wondering if the celiac is actually a misdiagnosis and the TTG was picking up my thyroid autoimmune.  I'm also wondering if I could be having such long-lasting and life-impacting symptoms of Hashi's or Graves when my antibody levels aren't super high.  

I know nobody here can diagnose me, but I'm really hoping someone with a similar story will read this and help me out.  Has anyone else had low level thyroid antibodies and an otherwise normal thyroid panel but LOTS of autoimmune thyroid symptoms?  Has anyone else been diagnosed celiac despite the biopsies being clean (and no DH)?  I just feel like all my doctors are taking stabs in the dark and I'm sick of it.  

[ironictruth]

1 hour ago, pavlovcat said:

I know it's a long shot but I'm hoping someone else out there has a similar story and can provide some encouragement or guidance.

So I'm diagnosed with Celiac despite a negative biopsy.  My gastro made the diagnosis based on being positive for the celiac gene and having elevated levels on the TTG test.  A decade ago I also tested positive two times on the TTG but had negative biopsies.  At that time the gastro I was seeing just shrugged and diagnosed IBS.  Fast forward to 2 months of being gluten free and having my symptoms continue to worsen and I happened upon someone who mentioned Graves disease.  Not knowing what it was, I looked it up and had a lot of the symptoms (eye pressure, chronic diarrhea, palpitations, weight loss, anxiety, etc.)  I asked my PCP to order a full thyroid panel, which showed normal thyroid levels but elevated thyroid antibodies (not sky high, but higher than the normal range).  He said I have Hashimoto's, then told me that wasn't the cause of my problems because the antibodies weren't high enough for me to be having any symptoms, and once again gave me the "you're just depressed and you have IBS" speech.  I'm sick of being anxious all the time and absolutely am struggling with depressive moods the last few months after 2 years of worsening symptoms with no relief and no answers, so I accepted his prescription for a low dose anti-depressant.  I also scheduled a second opinion with a new doctor.

There's a part of me that wants to believe my PCP.  Just take the pill every night and stop searching for answers and work on my mental health.  But I feel like nothing is adding up. I have a lot of the symptoms of Graves, but he diagnosed Hashimoto's and then told me the symptoms I was experiencing were all psychosomatic and were not related to the Hashimoto's.  I have a lot of symptoms of celiac, but being gluten free isn't helping (and yes, I am being super careful - not eating out, replaced kitchen utensils and equipment, I tried dairy free for 2 weeks and saw no improvement, I avoid gluten-free products with lots of gums in them, etc.).  I'm wondering if the celiac is actually a misdiagnosis and the TTG was picking up my thyroid autoimmune.  I'm also wondering if I could be having such long-lasting and life-impacting symptoms of Hashi's or Graves when my antibody levels aren't super high.  

I know nobody here can diagnose me, but I'm really hoping someone with a similar story will read this and help me out.  Has anyone else had low level thyroid antibodies and an otherwise normal thyroid panel but LOTS of autoimmune thyroid symptoms?  Has anyone else been diagnosed celiac despite the biopsies being clean (and no DH)?  I just feel like all my doctors are taking stabs in the dark and I'm sick of it.  

I am so sorry for what you are going through. 

I was falsely diagnosed with Hashi's and my antibodies were normal! I wish I could help by saying my story is like yours, which it is, but not in the ways you are looking. 

It is true, TTG  can be elevated in other disorders including problems with the liver.  you seem to sort of fit into the Latent or potential Celiac category.  I too sought out a second opinion and it was sort of a waste of time. I Ended up going to a Celiac specialist. I still don't have any answers one hundred percent,  but at least I know things can be accurately looked at in terms of whether or not my issues are related to gluten since I have a specialist. So I really hope your new doctor is well versed. 

 I only have a marsh one score or an increase in a certain cell in the intestine, I don't have any Villi blunting that was found. The way my specialist described it though you can be sick for a few weeks to a couple of months just from an exposure. You will see a lot of people on the boards here discussing that it can take months if not a year or longer to feel better. I always assumed it was because of the damage to the villi I but I think there are other factors involved as well. Unfortunately I am only a couple of weeks into a gluten-free diet and when I was previously on a gluten-free diet for three months I toO still did not feel well.  So I totally understand where you're coming from. You will see time and time again on this board the people tell you to be patient ,wait avoid exposure, avoid processed foods, and that it takes time.

 My brother is a confirmed Celiac and I can tell you he had some of the weird symptoms that you describe issues with his heart, eyes, we both get a pressure squeezing feeling in our brains.

 I do not know where you live or what your insurance situation is like but I  was able to go to a center for excellence to get both A celiac specialist and an endocrinologist to rule out the Hashimoto's.

 if you ever have a chance to read the book Jennifer's Way by Jennifer Esposito, she's an actress, she dealt with a similar situation. lots of diagnoses, lots of suggestions for psych meds. Took a long time to get a diagnosis. You may not have Celiac, but keep plugging away, you know your body.

 I wish I had better advice for you, then maybe I'd have some good advice for myself! Best of lucK, wishes for good health, and keep us posted.

[Ennis-TX]

I can not help with the hashi or the rest of the info much but we have some members with it that will chip in soon and help you out I am sure.  What I can help address is your stress and depression. Try taking a more natural approach, I find b-vitamins and magnesium work WONDERs with these. I also eat plenty of pumpkin seeds, and hemp which help with it. >.> emergency wise I use a vape pen with CBD oil if I start having a panic issue.   Brands and things I use are Natural Vitality Stress & Energy and Neurological Support 1tbsp each 3 times a day and I take a both Natural Vitality Calm (can be a bit harsh on the gut and you have to start off with very small doses) and Doctors best magnesium in powdered forms in a drink 2-3 times a day.  You can find all of them on LuckyVitamin.com 

[Posterboy]

1 hour ago, pavlovcat said:

I know it's a long shot but I'm hoping someone else out there has a similar story and can provide some encouragement or guidance.

So I'm diagnosed with Celiac despite a negative biopsy.  My gastro made the diagnosis based on being positive for the celiac gene and having elevated levels on the TTG test.  A decade ago I also tested positive two times on the TTG but had negative biopsies.  At that time the gastro I was seeing just shrugged and diagnosed IBS.  Fast forward to 2 months of being gluten free and having my symptoms continue to worsen and I happened upon someone who mentioned Graves disease.  Not knowing what it was, I looked it up and had a lot of the symptoms (eye pressure, chronic diarrhea, palpitations, weight loss, anxiety, etc.)  I asked my PCP to order a full thyroid panel, which showed normal thyroid levels but elevated thyroid antibodies (not sky high, but higher than the normal range).  He said I have Hashimoto's, then told me that wasn't the cause of my problems because the antibodies weren't high enough for me to be having any symptoms, and once again gave me the "you're just depressed and you have IBS" speech.  I'm sick of being anxious all the time and absolutely am struggling with depressive moods the last few months after 2 years of worsening symptoms with no relief and no answers, so I accepted his prescription for a low dose anti-depressant.  I also scheduled a second opinion with a new doctor.

There's a part of me that wants to believe my PCP.  Just take the pill every night and stop searching for answers and work on my mental health.  But I feel like nothing is adding up. I have a lot of the symptoms of Graves, but he diagnosed Hashimoto's and then told me the symptoms I was experiencing were all psychosomatic and were not related to the Hashimoto's.  I have a lot of symptoms of celiac, but being gluten free isn't helping (and yes, I am being super careful - not eating out, replaced kitchen utensils and equipment, I tried dairy free for 2 weeks and saw no improvement, I avoid gluten-free products with lots of gums in them, etc.).  I'm wondering if the celiac is actually a misdiagnosis and the TTG was picking up my thyroid autoimmune.  I'm also wondering if I could be having such long-lasting and life-impacting symptoms of Hashi's or Graves when my antibody levels aren't super high.  

I know nobody here can diagnose me, but I'm really hoping someone with a similar story will read this and help me out.  Has anyone else had low level thyroid antibodies and an otherwise normal thyroid panel but LOTS of autoimmune thyroid symptoms?  Has anyone else been diagnosed celiac despite the biopsies being clean (and no DH)?  I just feel like all my doctors are taking stabs in the dark and I'm sick of it.  

pavlovcat,

I wanted to speak to your depression and anxiety.

Anxiety is a separate condition but often common in depressed people.

I have had both.  When I took a Zinc lozenge (think the kind you find/take for colds) will help unnatural anxiety.

By that excessive worrying and fretting over everything.  Or having repeated worry about did I leave the stove on or check your car lights 10 times before going into a building etc.  Or thinking the worst every time someone says anything to you.

Zinc taken as Lozenge will self regulate it's absorbtion by tasting very metallic (to the point you want to spit it) out.

The first lozenge might be orange or cherry tasting the first day you take it but the 2nd or 3rd one that day or the 3rd day in a row will become mostly akaline tasting in your mouth then you have enough zinc. 

Your anxiety should get much better at that time.

For the depression Magnesium as a Citrate or a Magnesium Glycinate works wonders.

I have taken Magnesium Citrate for years but have recently transitioned to the Magnesium Glycinate for a number of reasons.

Here is the link for the Magnesium for depression.

Open Original Shared Link

I will quote the abstract in it's entirety now because it is short it should really help alleviate your depression issues.

There are other things you can do but I would start there and walk some or ride that bike of your's some more it (exercise) can really help lightening your moods.

Open Original Shared Link 2006;67(2):362-70. Epub 2006 Mar 20.

Rapid recovery from major depression using magnesium treatment.

Open Original Shared Link¹, Open Original Shared Link.

Open Original Shared Link

Abstract

"Major depression is a mood disorder characterized by a sense of inadequacy, despondency, decreased activity, pessimism, anhedonia and sadness where these symptoms severely disrupt and adversely affect the person's life, sometimes to such an extent that suicide is attempted or results. Antidepressant drugs are not always effective and some have been accused of causing an increased number of suicides particularly in young people. Magnesium deficiency is well known to produce neuropathologies. Only 16% of the magnesium found in whole wheat remains in refined flour, and magnesium has been removed from most drinking water supplies, setting a stage for human magnesium deficiency. Magnesium ions regulate calcium ion flow in neuronal calcium channels, helping to regulate neuronal nitric oxide production. In magnesium deficiency, neuronal requirements for magnesium may not be met, causing neuronal damage which could manifest as depression. Magnesium treatment is hypothesized to be effective in treating major depression resulting from intraneuronal magnesium deficits. These magnesium ion neuronal deficits may be induced by stress hormones, excessive dietary calcium as well as dietary deficiencies of magnesium. Case histories are presented showing rapid recovery (less than 7 days) from major depression using 125-300 mg of magnesium (as glycinate and taurinate) with each meal and at bedtime. Magnesium was found usually effective for treatment of depression in general use. Related and accompanying mental illnesses in these case histories including traumatic brain injury, headache, suicidal ideation, anxiety, irritability, insomnia, postpartum depression, cocaine, alcohol and tobacco abuse, hypersensitivity to calcium, short-term memory loss and IQ loss were also benefited. Dietary deficiencies of magnesium, coupled with excess calcium and stress may cause many cases of other related symptoms including agitation, anxiety, irritability, confusion, asthenia, sleeplessness, headache, delirium, hallucinations and hyperexcitability, with each of these having been previously documented. The possibility that magnesium deficiency is the cause of most major depression and related mental health problems including IQ loss and addiction is enormously important to public health and is recommended for immediate further study. Fortifying refined grain and drinking water with biologically available magnesium to pre-twentieth century levels is recommended."

I hope this is helpful.

**** this is not medical advise just some of the things I did to help alleviate my unnatural worry (anxiety) and depression.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

[plumbago]

1 hour ago, pavlovcat said:

I happened upon someone who mentioned Graves disease

Graves disease is an autoimmune disorder and the most common cause of hyperthyroidism. You now have a doctor telling you that no, you are not hyper- but rather hypothyroid. Hmm...which is it? The two conditions are the exact opposite of each other. My gut reaction is to yell out, “get off these boards, and research the best endo in your area asap and make an appt!” Also, I would research the heck out of your labs so you can know them backwards and forwards and then understand better what they say. Please let us know if there is anything else we can do. I personally do not have experience with either hypo or hyperthyroidism.

Plumbago

[cyclinglady]

If you had active Graves Disease, I think your symptoms would be more severe.   My Mom and cousin both have it.  My Mom has permanent double vision as a result. Both ladies had bulging eyes.    Both dropped weight like crazy.  Their Graves is no longer active.  

I have Hashi's (20 years).  I had an enlarged thyroid and nodules.  My antibodies were off the chart.  During menopause, my thyroid went crazy.  I would swing from hypo to hyper within days.  It drove my doctor nuts trying to adjust my meds.  My hyper symptoms were bad.  Eye pain (muscles around the eye), muscle weakness all over (hard to run), I was hot all the time (not a hot flash), insomnia, and I shook when I reached out.  I was crazy then too, but attributed that to my other hormones or lack of them.  Hypo meant that I dragged when trying to run, had to take a nap, was always cold (bought flannel gowns and I live in Southern California).  

Everything pretty much calmed down when I went through the menopause window, except I was iron deficient and my anemia was pretty severe.  That led to my celiac disease diagnosis.  After being on the gluten free diet, my thyroid is no longer enlarged and the nodules are gone.  Not sure if this is related to the diet or not.  My antibodies are now a mere 300 instead of 2,000 to 4,000.  I do have autoimmune hives.....but not sure if that is a stand alone issue, celiac disease or thyroid related.  

Your symptoms can be related to any AI issue.  Even if you have the start of Hashi's there is not much you can do.  Because I had the enlargement, nodules and very high antibodies, my old doctor put me in a tiny dose of Armour thyroid, but that did not stop the progression of permanent thyroid damage.  You can keep monitoring it.  

You know that something is wrong.  I think you should keep pushing for a diagnosis.   How elevated was your TTG?  How elevated were your thyroid antibodies?  Did you ever get a complete panel?  Has PCOS been ruled out by your GYN?  I wish you well!  

[pavlovcat]

I've never considered having PCOS.  My primary symptom is chronic diarrhea (often without any cramps - just varying levels of discomfort and urgency, but every few months I have an attack so horrendously painful that I almost pass out and the last time I was vomiting as well).  2 years ago I was diagnosed with GERD but the only symptom of that (at least, my PCP attributes this symptom to GERD) is left side chest and arm pain and a fluttery feeling that is sometimes in my chest and sometimes in my throat.  It feels like heart palpitations to me when it's in my chest.  Often times when I get the fluttery feeling, I'll also feel out of breath and/or lightheaded.  I've had my heart checked and it's fine.  I also sometimes get a heavy swollen feeling in my throat.  I have had a chronic cough and gravely voice for over a year, and I have pressure behind my eyes, sometimes with blurred vision.  And then there's the lovely anxiety.  This all began escalating a couple of weeks after I blew a disc in my back.  It started with just the gastrointestinal symptoms and about a year ago the other symptoms kicked into gear. 

In the last two years I've lost 60 lbs.  Some of that is due to undereating, since limited food intake is the only thing that allows me a little bit of control over how bad my diarrhea gets, but I don't know that all of it is undereating.  I've also had thinning hair for the last decade.  It started thinning at the same time I had my first gastro flare and tested positive for the celiac antibodies.

I've tried probiotics, enzymes, St. John's Wort, and Questran.  I've had a colonoscopy, endoscopy, all the fun fecal tests, blood tests, the upper GI barium test, and a CT scan.  I've considered bringing my gyno into the loop as I've been experiencing some possible hormonal changes as well.

My TTG test was 19.something.  I don't know what the test results were a decade ago when I got tested then. My thyroid antibody test was 34.something.  

I will say, I am very sensitive to changes in my body.  When I take a medication, I get the side effects and usually the weird rare ones - and yes, that happens even if I don't read the side effect list.  Sometimes I'll just hand it to my husband and let him read it and then tell him anything I experience so that I know I'm not having psychosomatic responses.  I wouldn't be surprised if I was super sensitive to minor fluctuations in my thyroid.

Oh, and I have Reynaud's.  I believe that can be a sort of autoimmune red flag or sorts?  I've always had that.  

I appreciate the advice on Magnesium, but that's a laxative and I don't need anything else causing diarrhea.  My PCP was supposed to refer me to an endocrinologist but I've not yet gotten a call.  He only agreed to make the referral after I requested it - he doesn't think I need to see an endo.

ETA:  I keep thinking of new possible symptoms.  I'm terrible with any temperature extremes and don't respond normally to them.  I actually tend to sweat more when I'm cold.  When I'm hot I just get sort of clammy and then get the chills.  That's new in the last few years - I can't pinpoint an exact time.  

[Posterboy]

2 hours ago, pavlovcat said:

I've never considered having PCOS.  My primary symptom is chronic diarrhea (often without any cramps - just varying levels of discomfort and urgency, but every few months I have an attack so horrendously painful that I almost pass out and the last time I was vomiting as well).  2 years ago I was diagnosed with GERD but the only symptom of that (at least, my PCP attributes this symptom to GERD) is left side chest and arm pain and a fluttery feeling that is sometimes in my chest and sometimes in my throat.  It feels like heart palpitations to me when it's in my chest.  Often times when I get the fluttery feeling, I'll also feel out of breath and/or lightheaded.  I've had my heart checked and it's fine.  I also sometimes get a heavy swollen feeling in my throat.  I have had a chronic cough and gravely voice for over a year, and I have pressure behind my eyes, sometimes with blurred vision.  And then there's the lovely anxiety.  This all began escalating a couple of weeks after I blew a disc in my back.  It started with just the gastrointestinal symptoms and about a year ago the other symptoms kicked into gear. 

In the last two years I've lost 60 lbs.  Some of that is due to undereating, since limited food intake is the only thing that allows me a little bit of control over how bad my diarrhea gets, but I don't know that all of it is undereating.  I've also had thinning hair for the last decade.  It started thinning at the same time I had my first gastro flare and tested positive for the celiac antibodies.

I've tried probiotics, enzymes, St. John's Wort, and Questran.  I've had a colonoscopy, endoscopy, all the fun fecal tests, blood tests, the upper GI barium test, and a CT scan.  I've considered bringing my gyno into the loop as I've been experiencing some possible hormonal changes as well.

My TTG test was 19.something.  I don't know what the test results were a decade ago when I got tested then. My thyroid antibody test was 34.something.  

I will say, I am very sensitive to changes in my body.  When I take a medication, I get the side effects and usually the weird rare ones - and yes, that happens even if I don't read the side effect list.  Sometimes I'll just hand it to my husband and let him read it and then tell him anything I experience so that I know I'm not having psychosomatic responses.  I wouldn't be surprised if I was super sensitive to minor fluctuations in my thyroid.

Oh, and I have Reynaud's.  I believe that can be a sort of autoimmune red flag or sorts?  I've always had that.  

I appreciate the advice on Magnesium, but that's a laxative and I don't need anything else causing diarrhea.  My PCP was supposed to refer me to an endocrinologist but I've not yet gotten a call.  He only agreed to make the referral after I requested it - he doesn't think I need to see an endo.

ETA:  I keep thinking of new possible symptoms.  I'm terrible with any temperature extremes and don't respond normally to them.  I actually tend to sweat more when I'm cold.  When I'm hot I just get sort of clammy and then get the chills.  That's new in the last few years - I can't pinpoint an exact time.  

pavlovcat,

Plumbago is right you have a medical problem.

We can't diagnose or treat you but we can offer you advise based on our own research and the symptom's we have had for ourselves that have occurred as part of our celiac diagnosis.

Using my the SWAG method.  If you don't know what SWAG stand's for look it up.

Cycylinglady this is for your daughter too!

pavlovcat it is one thing to diagnose a disease it is much harder sometimes to recover from it.

I have focused on nutrition to help me.

A note on the Magnesium find you a Magnesium Glycinate form and it won't flush you.

here is thread that talks about how to take Magnesium for best effect but in short find a Magnesium GLYCINATE and you will be happy with your results.

Remember I said of late I have transitioned to the Glycinate form for many reasons and this is one of those reasons.

back to the SWAG.

I think you have all the symptom's of Carcinoid Syndrome.

The Reynaud Syndrome comment triggered my memory.  The blue veins symptom also is a sign of Carinoid Syndrome.

I remember cyclinglady talking about her daughter who has Reynaud's Syndrome so I researched it some and it turns out Carinoid Syndrome has many of the same"differntial diagnosis" symptom's.

It is a syndrome with many symptom's but many of them match up to the symptom's you are having.

I know this because I am dubbed the "Pellagra Professor" on this board and it is one of  the more advanced (considered inborn)  presentations of Pellagra  as you mentioned you have always had it disease and can be confused for Reynaud's syndrome.

the excessive weight loss could be from the diarrhea.

the poor nutritional status is obviously effecting your thyroid too!

Many thyroid problems are reversible with proper nutrition.  The Minerals that work best for thyroid problems are Iodine and Selenium.  Selenium is found in Brazil nuts and algae supplements have a lot of Iodine or you can just put some on your skin (half dollar size) every night until it stains you in the morning a sign your body is no longer low in iodine.  Just like the zinc lozenges your body will self regulate its' need for Iodine by not absorbing it anymore - hence the stain 8 hours later (in the morning) when your body is no longer low in Iodine.

Zinc is important too and can be found in Pumpkin seeds.

here is a NYtimes article that discusses the many ways a thyroid condition can present itself.

The term often used for Thyroid problems is a "thyroid storm".

Open Original Shared Link

here is a good overview of the ways carcinoids syndrome presents.

it also explains the PCOS you have.

they are carcinoid tumor instead (Usually benging) typically only found on an autopsy so don't let this scare you.

Open Original Shared Link

according to the carcinoid foundation quoting

"In a group of 91 patients, analysis of how they came to clinical attention revealed that three-quarters of patients came to attention because of diarrhea. Two-thirds came to attention because of flushing.  You can have severe diarrhea with virtually no flushing.  You can have severe flushing with trivial diarrhea, but most commonly patients will have both flushing and diarrhea." 

again this is only a swag guess but it give you something else to consider.

who know's it is probably wrong but Pellagra present's more in Celiac' patients that most doctor's are aware of.

celiac.com ran an article on it 6 months ago and carcinoid syndrome is like Pellagra on steroids because their is in born processing error of serontonin it is believed.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

it if is carcinoid syndrome then taking Niacinamide in massive doses can help the diarrhea.

I need some sleep but wanted to respond before going to bed so you could do some research on it your self.

there is at least a 50% I am wrong maybe a 90% chance I am wrong but it is worth shot.

****this is not medical advice but something that it could be????? course it could not be too!

I hope this is helpful.

posterboy,

[Posterboy]

pavlovcat,

oh it's late and I forget this quick webmd slideshow that has a great 13 slide presentation of the overview of the symptom's of carcinoid syndrome.

Open Original Shared Link

their one side says it all to me it is a set of symptom's much like celiac disease.

A Set of Symptoms

"Carcinoid syndrome occurs when these tumors have spread to organs outside the intestine. The syndrome can also occur with a carcinoid tumor of the ovary. The symptoms of carcinoid syndrome may not occur for several years, if they occur at all. Many of its symptoms mimic those of other medical conditions, such as irritable bowel syndrome."

Again I hope this is helpful.

posterboy,

[cyclinglady]

Well, we are not doctors, but most of us can feel your  frustration at not seeing symptom improvement or getting a really firm diagnosis.  I just threw out PCOS because I saw an earlier posting about you having acne and hair issues in an earlier posting, but I honestly do not have a clue:

"Since going gluten free my hormones seem to have changed.  My acne is suddenly back after being gone for years, my nails split and peel (something they did my whole life until I got pregnant, and then they were strong until now), my breasts are suddenly sprouting these odd tiny white hairs that pull out with no resistance, my PMS symptoms now include a delightful 4 or 5 days of loose bm's, and I get irritable and emotional around ovulation time. "

Going back to celiac disease.  It does take lots of time to heal. Most take a year or longer, I kid you not!    Sometimes, symptoms can get worse before it gets better and each accidental  exposure to gluten can cause different symptoms.  Look for possible cross contamination.  Do not eat out and avoid processed foods as much as you can.  Read the Newbie 101 section for tips (found under the "Coping" section of the forum.  Little things like kissing your hubby after he has consumed gluten can make you sick (or slobbery kisses from adorable children).  

Consider obtaining and maintaining all health records.  It is your right to have copies of those records.  Nice to have to share with new doctors too.  

Take care.  

 

 

[cyclinglady]

1 hour ago, Posterboy said:

pavlovcat,

oh it's late and I forget this quick webmd slideshow that has a great 13 slide presentation of the overview of the symptom's of carcinoid syndrome.

Open Original Shared Link

their one side says it all to me it is a set of symptom's much like celiac disease.

A Set of Symptoms

"Carcinoid syndrome occurs when these tumors have spread to organs outside the intestine. The syndrome can also occur with a carcinoid tumor of the ovary. The symptoms of carcinoid syndrome may not occur for several years, if they occur at all. Many of its symptoms mimic those of other medical conditions, such as irritable bowel syndrome."

Again I hope this is helpful.

posterboy,

Holy Cow!  This is RARE!  Let's not jump to cancer and scare the ?!&! out of her!  Nice to be helpful though! ?

[ravenwoodglass]

Your statement about painless D really resounded with me. For many years my D was painless and with no warning which caused a great deal of anxiety. Eventually the D did end up being preceded by cramps that increased in severity and would wake me almost every night. My GI stated that the waking with D in the middle of the night was a hallmark sign of celiac so if this is happening to you please make sure your doctor is listening when you tell him/her. IBS does not wake someone out of a sound sleep.  I agree with the previous poster who advised consulting with a good endocrinologist.  It is quite posible that you have more than one thing going on. I hope you get some answers soon.

[ravenwoodglass]

4 hours ago, Posterboy said:

 

I think you have all the symptom's of Carcinoid Syndrome.

The Reynaud Syndrome comment triggered my memory.  The blue veins symptom also is a sign of Carinoid Syndrome.

I remember cyclinglady talking about her daughter who has Reynaud's Syndrome so I researched it some and it turns out Carinoid Syndrome has many of the same"differntial diagnosis" symptom's.

It is a syndrome with many symptom's but many of them match up to the symptom's you are having.

 

OP Please don't let this scare you.  If you feel the need do mention his thoughts to your doctor so the doctor can set your mind at ease. 

[ironictruth]

So, I have gotten the heart arm/thing.  it's still unsettling when it happens but I'm much better at dealing with it now. My brother who's a confirmEd Celiac also had it. he doesn't go to doctors very often but when he got sick he ended up going to two cardiologist because he really truly thought there was something wrong with his heart.

 it turns out it was a vagal response from the irritation in the gut.  

[pavlovcat]

Thank you so much to everyone who's responding.  I guess when I heard there was no damage found in my intestines I assumed that I wouldn't have to deal with a long, drawn out recovery in terms of intestinal issues, but perhaps that isn't true.  

Posterboy, I will check into the Magnesium Glycinate.  

Cyclinglady, yes, my hormones have been a little whacky lately.  I was actually thinking perhaps I should get checked for endometriosis as that can also have intestinal symptoms.

Plumbago and Ravenwoodglass, I will be finding my own endocrinologist.  Since my doctor doesn't seem to think I need one, I'm not very confident in whomever he referred me to.  Seems reasonable to think he would refer to physicians that he knows and shares similar philosophies with.  

Ironictruth, thank you for telling me about your chest/heart symptoms.  When it happens I do often tell myself that it's likely vasovagal or GERD related, but it's still very anxiety producing.  It's like chest pain overrides even the strongest frontal lobe response and heads right for the amygdala.  Makes sense, as chest pain is very often a symptom that requires urgent action, but that doesn't help me much as I try to talk myself down of the proverbial cliff.  

[cyclinglady]

Oh, one more thought.  I could have sworn that my niece had celiac disease.  She tested negative.  Her 4th GI, finally ordered a pill camera.  They found Crohn's (she did not present with typical Crohn's symptoms) located at the very end of her small intestine beyond the reach of an endoscopy or colonoscopy.  

Not suggesting Crohn's, but not everything fits a textbook description.  Keep advocating!  

[pavlovcat]

1 minute ago, cyclinglady said:

Oh, one more thought.  I could have sworn that my niece had celiac disease.  She tested negative.  Her 4th GI, finally ordered a pill camera.  They found Crohn's (she did not present with typical Crohn's symptoms) located at the very end of her small intestine beyond the reach of an endoscopy or colonoscopy.  

Not suggesting Crohn's, but not everything fits a textbook description.  Keep advocating!  

That's interesting.  I did have the pill camera a decade ago and it didn't find anything, but I am decidedly sicker this time around.  Part of the reason I'm hesitant to keep pushing for more tests is because I remember that terrible year when I had a bad flare a decade ago.  Test after test after test with no conclusive results.  It was exhausting and expensive and demoralizing and all I ended up with was an IBS diagnosis.  I felt like a hypochondriac.  But perhaps if I'd kept searching for answers back then, I wouldn't be having the problems I'm having now.

[Posterboy]

16 hours ago, cyclinglady said:

Holy Cow!  This is RARE!  Let's not jump to cancer and scare the ?!&! out of her!  Nice to be helpful though! ?

cycylinglady and pavlovcat,

I wasn't trying to alarm just make pavlovcat aware of a disease that might also explain these "set of symptom's" and if she had already a formal Rynaud's diagnosis then it could be helpful for her to know that a differential diagnosis of this conditon/disease should include a 2nd look at Carcinoid syndrome.

It (CS) is only one of 10+ disease's Rynaud's might also be.

Open Original Shared Link

I study a lot and it was basically unknown to me the first time I heard of it.

there is actually several different disease her Rynaud's might be and was only trying to be helpful.

Because if you don't know to look for something or where to look for it (like your lost keys) you never find them.

symptom's are "keys" in the medical world and we often think they only fit one door (diagnosis) but the truth is symptom's can fit many doors.

The trick is finding the correct door . . . alas if only it was that simple right?

Vitamins/Minerals are keys to good health in my book and why I advocate for them and try to find what vitamin/mineral unlocks my door to health first.

So if I study a lot (and most of do on this board) then I knew pavlovcat was probably not aware that carcinoid syndrome at least is as common as rynaud's syndrome and lupus and should be investigated as a 2nd opinion.

We think everything it black and white (or would like to believe it is) as you note cycylinglady. . ..not everything fit's a textbook description.

8 hours ago, cyclinglady said:

Not suggesting Crohn's, but not everything fits a textbook description.  Keep advocating!  

And if it does some time's the doctor is looking in the wrong text book (disease).

And if they never open the Pellagra/Carcinoid Syndrome book they never find it.

They find Reynaud's syndrome or lupus or sjogren's instead and that would be a dis-service to pavlovcat if no one mentioned this possibilty.

because people recover from Pellagra when they are provided the proper nutrition.

And Carcinoid syndrome is a inborn metabolic malfunction in processing of the way the body uses tryptophan to make serotonin instead of niacin thus causing Pellagra like symptom's.

And taking Niacinamide can treat the diarrhea that pavlovcat described as her main symptom a classic sign of carcinoid syndrome.

here is the abstract.

Open Original Shared Link

quoted in it's entirety below because I am sure I did not explain it well.

Abstract  "Pellagra and the Carcinoid Syndrome"

"Pellagra, a disease of niacin-deficiency, may occur in association with the carcinoid syndrome. A 63-year-old black woman had both diseases. In the carcinoid syndrome, functioning tumor cells indirectly depress endogenous niacin production by diverting tryptophan metabolism towards serotonin and away from niacin. Anorexia and diarrhea, frequently present in the carcinoid syndrome, reduce the availability of exogenous niacin by decreasing the amount ingested and absorbed. The decreased availability of endogenous and exogenous niacin eventually results in the depressed tissue niacin levels responsible for the development of pellagra. In our patient, oral and parenteral administration of niacinamide (nicotinamide; the amide form of niacin) led to rapid clearing of the pellagrous dermatitis."

Which is to to say  a "shot" of Niacinamide helped the "odd and rare" set of symptom's.

they are so rare today we and doctor's do not recognize them as Pellagra when we see them any more.

we call them possibly rynaud's syndrom or carcinoid syndrome if we are lucky and realize that a vitamin can help this condition and quickly under the right supervision and treatment.

I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

****this is not medical advice but deep research and a keen eye for patterns that I first saw present in myself when I was first diagnosed as a Celiac after 30+years of suffering from un-diagnosed Pellagra.

good luck on your continued journey pavlovcat.

posterboy by the grace of God,

 

[kareng]

Please don't let these non-medical " researchers" scare or confuse you.  I doubt most of them have actually done any real medical research.  Start with what you and your doctor know and go from there. 

I don't know if any one explained how you can have a negative biopsy but positive blood work?  It  really a simple explanation.  You have approx 17-20 feet of intestines.  Celiac disease can "eat away " at your small intestine in patches.  You can have a lot of damaged places but still have a lot of undamged places.  So  pin prick size biopsies of 4 places, could hit all the good spots and miss the bad ones.  That is a simple explanation.  

Edit to add - have you seen an endocrine doctor?  They specialize  in things like thyroid and might be more helpful than just a general  doctor

[pavlovcat]

On 6/21/2017 at 7:27 PM, kareng said:

Please don't let these non-medical " researchers" scare or confuse you.  I doubt most of them have actually done any real medical research.  Start with what you and your doctor know and go from there. 

I don't know if any one explained how you can have a negative biopsy but positive blood work?  It  really a simple explanation.  You have approx 17-20 feet of intestines.  Celiac disease can "eat away " at your small intestine in patches.  You can have a lot of damaged places but still have a lot of undamged places.  So  pin prick size biopsies of 4 places, could hit all the good spots and miss the bad ones.  That is a simple explanation.  

Edit to add - have you seen an endocrine doctor?  They specialize  in things like thyroid and might be more helpful than just a general  doctor

The earliest I can get in with an endo is November, but I do have an appointment scheduled.  I also have a second opinion scheduled for Monday with another general practitioner.    

My gastro did tell me that it was possible the damage was patchy and he just struck out with all the biopsies.  It's frustrating not to have a solid diagnosis though, especially as my symptoms worsen despite being gluten free.  

I might try a paleo or WholeFoods30 type diet for a month to make sure I'm not getting contaminated by any processed foods I'm eating.  My daughter doesn't prepare her own food, so I know she's not contaminating me, but I suppose I should make sure my husband is being strict about not using the toaster/pb/honey/etc. for my daughter's food.  He's been gluten free for years, so I assumed he would be strict with it.