Results Are In - Feeling Very Depressed And Confused

[Smarts]

I'm really here for a shoulder to cry on, though I really feel like I'm not meant to be on here at all now !! Most of all I am confused and angry. Sorry - but I am going to blabber on for a bit - please bare with me. Until I was 27 I lived in UK where in hindsight my treatment by doctors was appalling. I had stomach problems, health issues, mood disorders for as long as I can remember. From age of 8 when I presented with a terrifying classic migraine (full aura etc.) I was labelled neurotic and so it continued. I had a barium meal when I was 21 which showed up extreme inflammation in the duodenum. My doc put me on Zantac. When that didn't work he said "too bad". When I asked if there was a link between this and depression he called me stupid. I suffered with chronic fatigue and suicidal depression throughout my 20's and I would have done it alone (and been dead by now) if it wasn't for wonderful alternative health practitioners who didn't look for labels for my illness, but listened to me and helped me. By the time I moved to Australia 14 years ago (where I am now) I was so over the medical profession, but my experiences here have been mainly positive. I never bothered with gastro doctors again - subsequent endoscopies and colonoscopies always showed up nothing. In Oz the docs just accepted my own conclusion that I had inherited the family stomach and the family mood disorders (all from the maternal line of my family) - even when I was hospitalised in the last trimester of pregnancy because food fired out of all ends of me doctors were happy with that explanation

Meanwhile I have a wonderful GP and am under the care of a fabulous psychiatrist who changed my chronic depression dx (from another fab psych' during my pregnancies) to bipolar II

So last year my stomach got really bad again and I paid another trip to the GP for another course of something such as Pariet. I was asked when I last had an endoscopy and I told them not since I was 25. So they sent me off to this big name Gastro doc. Big credentials. He ran blood tests and an endoscopy. The endoscopy only showed up the reflux and a sliding hiatus hernia (nothing serious), but the doc jumped up at my blood tests. My iron levels were through the floor (personally I wasn't interested). He then ran a colonoscopy - all was clear (yay). But he so much wanted to find the cause of the iron deficiency, I so wanted to be discharged. So in May he talked me into walking around all day with pads stuck to my tummy connected by wires to a suspicious looking black box, with nil by mouth (a capsule endoscopy), so uncomfortable. He wanted me to have this as the test is so thorough, it picks up everything - and if all was well (as he thought it would be) he would then discharge me.

So on June 22 I walked into his surgery expecting a nice friendly "goodbye nice knowing you". Instead he said he wanted to show me something from my capsule endoscopy. It had been missed on the other endoscopy somehow, but there are all these patches in my small intestine, they should be covered in lovely hairy fingers but they are flattened or cut off (he didn't actually use the term villious atrophy, but I think that's what he meant). "Oh would this explain my iron deficiency?" "absolutely and more - this looks like a wheat intolerance, I will run some more blood tests". I looked at the blood test form and it said Celiac gene test.

So I went back there today. My tummy was feeling pretty bad all day (maybe nerves) - I couldn't think of anything I'd eaten (I've been gluten free since June 22, except last week when I tried gluten and had lots of symptoms) . The doc asked me how I was and I told him. Then I told him about the gluten free diet. He started asking about all these medications that I don't take anymore, like he was confused by my file. He asked to feel my tummy (what is it with these docs, they always want to feel my tummy and they never find anything there except gurgling?). He then asked me what stomach meds I was taking "you put me on 1 pariet a day after you saw my capsule endoscopy" "oh yes, well you have advanced reflux so lets put it up to 2". I asked about my blood tests. He looked on the computer to see what I was talking about "oh you mean the celiac test - no you are negative, in fact you couldn't get more negative. There are 4 genes we tested you for and you are only positive for one. If you had celiacs you would have 3 or 4 of those genes. You have no food intolerances whatsoever either - you are the last person on this earth who could have Celiac Disease or a food intolerance". He then told me he wants me to go have an ultrasound of my tummy. WHAT? MORE TESTS!!!

I really hate doctors !!!! Haven't I had enough tests? The patches he was talking about, that is villious atrophy isn't it? Why didn't he talk about that or my iron deficiency today? In 1 whole year he has had no real interest in my reflux, only my anaemia. Someone please help me. What is going on and what do I do now?

My husband wants to take our kids off the gluten free diet now - and me too. He finds it a strain and he thinks it's all a load of nonsense without a doctors validation.

I am so tempted to go out and stuff my face with a massive loaf of gluten rich bread - beacause I am sure I will react... and then that'll show 'em

Thanks for listening

[ravenwoodglass]

What you do now is get on the gluten free diet and heal. You are correct that the villious blunting is likely from celiac. Your doctor decided it wasn't because of your genetic results. Gene testing is not the absolute that some doctors think it is. For one thing it is a relatively new science and not all is known about how many genes are actually associated with celiac. False negatives on blood work and biopsy are also all to common.

Your reactions to being gluten free and your response to accidental or deliberate injestion of gluten IMHO trump the tests. You don't need these doctors permission to eat gluten free although I do understand that in some countries we can get reduced or free gluten-free baked goods with one.

I fully understand your frustration and anger. It took so very many years for me to get diagnosed because doctors relied only on the blood work. Your in the right place to vent and to get the info you need.

I hope you heal quickly and feel free to ask any questions you need to.

[nora-n]

You are only positive for one of four genes?? Dq2 or DQ8?

I think he means the 05* alpha chain, the 02* beta chain, the 0301 beta chain and Idontknow, maybe another alpha chain.

Nonsense, you only need one of these genes, DQ2 by trans or by cis, the 05* alpha chain, or the DQ8 gene to have a high risk for celiac.

It is not possible to have all three of them at the same time either, let alone four.

[Jestgar]

The genes are useless in terms of determining celiac disease or gluten intolerance. Consider getting a new doc.

[cassP]

OMG Smarts- your doc sounds like he has multiple personality disorder!!!! either that- or he was put in his place by some Pharmaceutical reps... crazy. the girls above are right- listen to your body & get a new doc. Also: get copies of your blood AND gene tests from your doc- keep your own file- with Celiac & Gluten Intolerance you really have to be your own patient advocate. dont worry

[Skylark]

I had bipolar from gluten too. My story is in my profile.

Yes, the "flat patches" are villous atrophy. If you have villous atrophy and eating gluten makes you sick, YOU ARE CELIAC! If you want some help with the genetic tests, post the exact results here because it looks like your doctor doesn't know how to interpret them.

If you feel better on the diet, remember that what you eat is completely under your control. It doesn't take a prescription to follow a gluten-free diet. Your husband will come around as you feel better. A lot of us with mood disorders from celiac enjoy positive changes in our personality once our bodies heal. Friends and family usually love the differences.

[Smarts]

You are only positive for one of four genes?? Dq2 or DQ8?

I think he means the 05* alpha chain, the 02* beta chain, the 0301 beta chain and Idontknow, maybe another alpha chain.

Nonsense, you only need one of these genes, DQ2 by trans or by cis, the 05* alpha chain, or the DQ8 gene to have a high risk for celiac.

It is not possible to have all three of them at the same time either, let alone four.

As usual you guys have been amazing. I am still feeling really horrible about the whole thing, and really kinda bipolar. I am now wondering if the fact that I have had a really upset stomach and this massive mood swing over the past 24 hrs could relate in anyway to what I ate at the weekend - I didn't feel great after eating a gluten free (base) pizza on Sat night. It probably contained corn anyway, but I wonder what is in the tomato sauce and the mayonnaise topping. Also one pizza had blue cheese and I just heard that that can be a problem. But then again a part of me feels like a right idiot thinking about it at all.

Anyway I digress. Nora thanks for this info - I was thrown by the gene thing as I thought you only needed one gene to be high risk. The doc didn't show me any results, just told me in a belittling tone that Celiac and all food intolerances were out and didn't even mention either the iron deficiency or villous atrophy. I really want to know what he meant by what he said.

I work with a woman who has had her whole family dx'd with either gluten intolerance or Celiacs. She has been convinced for years that I have it. When I told her the results her jaw dropped and she called my doc an idiot. She gave me a card for her doctor who specialises in gluten intolerances. He isn't conventional and main stream. I've made an appointment for Monday and was told to bring along my test results. Now I need to pluck up the courage to phone my doc and demand my blood test results and I also want the results of my capsule endoscopy while I'm at it.

I'm really in two minds about wasting my time going for the upper abdominal ultrasound. What does he expect to find that he hasn't already from an endoscopy, colonoscopy, ultrasound of gall bladder, 2 rounds of blood tests and capsule endoscopy?

[nora-n]

Yes, flattened villi is often found on video capsule endoscodpies but missed in ordinary endoscopies.

We have had several postings about that on various celiac forums.

That means celiac.

Your gene test I guess was positive since most people only have one gene positive and one does NOT need both genes positive simultaniously.

We have seen postings that some doctors believe both genes must be positive. This doctor here believes one needs four genes but there are no four genes so he must mean all four alleles.

One only has one pair of HLA DQ genes, one from mother and one from father. Not three or four. So his statement that you only have one positive and you need three or four is total nonsense. The only way I can interpret it is that he meant the alpha and beta chains in these two HLA DQ genes that everyone has, that makes a total of four, two beta chains and two alpha chains.

Check out HLA DQ in en.wikipedia.org to see the chart.

[SJD]

Hi,

I'm new here, but my 8 yr old daughter I'm pretty sure has celiac. She has been chronically constipated since birth, she suffers headaches (possibly migraines) during the night, very lethargic (putsy), depressed, always wanting to sleep, never hungry, her bone growth is that of a 6 yr old, she has SEVERE ezcema, multiple food allergies (eggs, milk, wheat, peanuts, but not gluten). She has suffered several kidney infections, which have left her hospitalized each time. It's been a LONG frustrating 8 years. This past march the gastroenterologist did numerous tests and blood work, but all were negative. In april she had an endoscopy and a colonoscopy, but YES they were NEGATIVE! I was so frustrated that I stopped bringing her to the doctor and the day after her procedure I stopped all gluten in her diet. Two days later she was going to the bathroom normally for the first time in her life and she was asking for seconds at meal time (which has NEVER happened, it was like pulling teeth to get her to eat ANYTHING), she has energy and is happy! I have concluded that she is Celiac and I don't need a doctor to tell me otherwise. I wish I had results so I could prove it to others.

Well, now after reading so many articles, books, and this website, I'm very convinced that I, as well as my other two children may have Celiac as well. I did the blood test last week and of course it was negative. I started on the gluten free diet as of Tuesday so we'll see how it goes...

I am 30 yrs old and I spent 13 years on antidepressants for depression, severe anxiety, OCD, and possible Borderline personality. I have anger issues, which no one seems to be able to help me with, and consequently led to my divorce 7 yrs ago. Growing up I had chronic urinary tract infections, but surgery helped that. I have had horrible stomach pains since childhood, which literally drop me to the floor in pain. Doctors told me I had ovarian cysts. I had 4 laporascopic surgeries to remove small cysts and/or find nothing wrong. I was then told it was endometriosis, but after more laps they didn't find anything. Then last year, at age 29 I had a full hysterectomy with a diagosis of Adenomyosis, but get this at my post-op the doctor told me that my pathology report was negative for any abnormalities!! In other words I had a hysterectomy for NO REASON!@!#@@!! And yes, I STILL have pain!

If that weren't enough I have now been told that I am in the early stages of Rheumatoid Arthritis! Could it get any better than that?! (kidding!)

So, what do I do? I guess I'm trying the gluten free diet and I'll see what happens, but if any of you wonderful people out there have any ideas for me or my children I would LOVE to hear them.

May the Lord bless you all!

Emily

[ravenwoodglass]

Hi,

I'm new here, but my 8 yr old daughter I'm pretty sure has celiac. She has been chronically constipated since birth, she suffers headaches (possibly migraines) during the night, very lethargic (putsy), depressed, always wanting to sleep, never hungry, her bone growth is that of a 6 yr old, she has SEVERE ezcema, multiple food allergies (eggs, milk, wheat, peanuts, but not gluten). She has suffered several kidney infections, which have left her hospitalized each time. It's been a LONG frustrating 8 years. This past march the gastroenterologist did numerous tests and blood work, but all were negative. In april she had an endoscopy and a colonoscopy, but YES they were NEGATIVE! I was so frustrated that I stopped bringing her to the doctor and the day after her procedure I stopped all gluten in her diet. Two days later she was going to the bathroom normally for the first time in her life and she was asking for seconds at meal time (which has NEVER happened, it was like pulling teeth to get her to eat ANYTHING), she has energy and is happy! I have concluded that she is Celiac and I don't need a doctor to tell me otherwise. I wish I had results so I could prove it to others.

Well, now after reading so many articles, books, and this website, I'm very convinced that I, as well as my other two children may have Celiac as well. I did the blood test last week and of course it was negative. I started on the gluten free diet as of Tuesday so we'll see how it goes...

I am 30 yrs old and I spent 13 years on antidepressants for depression, severe anxiety, OCD, and possible Borderline personality. I have anger issues, which no one seems to be able to help me with, and consequently led to my divorce 7 yrs ago. Growing up I had chronic urinary tract infections, but surgery helped that. I have had horrible stomach pains since childhood, which literally drop me to the floor in pain. Doctors told me I had ovarian cysts. I had 4 laporascopic surgeries to remove small cysts and/or find nothing wrong. I was then told it was endometriosis, but after more laps they didn't find anything. Then last year, at age 29 I had a full hysterectomy with a diagosis of Adenomyosis, but get this at my post-op the doctor told me that my pathology report was negative for any abnormalities!! In other words I had a hysterectomy for NO REASON!@!#@@!! And yes, I STILL have pain!

If that weren't enough I have now been told that I am in the early stages of Rheumatoid Arthritis! Could it get any better than that?! (kidding!)

So, what do I do? I guess I'm trying the gluten free diet and I'll see what happens, but if any of you wonderful people out there have any ideas for me or my children I would LOVE to hear them.

May the Lord bless you all!

Emily

First off ((((((((((((((((hugs))))))))))))))))))

You have been through so much. Yes do try the diet for the whole family and be strict about it. I think you will find the whole family will benefit. Ask any questions you need to here and welcome.

[SJD]

Thank you!! I forgot to mention the obvious symptom of chronic constipation/diarrhea (it's one or the other and there is no in-between).

Thanks again for your support!

[Smarts]

Hi,

I'm new here, but my 8 yr old daughter I'm pretty sure has celiac. She has been chronically constipated since birth, she suffers headaches (possibly migraines) during the night, very lethargic (putsy), depressed, always wanting to sleep, never hungry, her bone growth is that of a 6 yr old, she has SEVERE ezcema, multiple food allergies (eggs, milk, wheat, peanuts, but not gluten). She has suffered several kidney infections, which have left her hospitalized each time. It's been a LONG frustrating 8 years. This past march the gastroenterologist did numerous tests and blood work, but all were negative. In april she had an endoscopy and a colonoscopy, but YES they were NEGATIVE! I was so frustrated that I stopped bringing her to the doctor and the day after her procedure I stopped all gluten in her diet. Two days later she was going to the bathroom normally for the first time in her life and she was asking for seconds at meal time (which has NEVER happened, it was like pulling teeth to get her to eat ANYTHING), she has energy and is happy! I have concluded that she is Celiac and I don't need a doctor to tell me otherwise. I wish I had results so I could prove it to others.

Well, now after reading so many articles, books, and this website, I'm very convinced that I, as well as my other two children may have Celiac as well. I did the blood test last week and of course it was negative. I started on the gluten free diet as of Tuesday so we'll see how it goes...

I am 30 yrs old and I spent 13 years on antidepressants for depression, severe anxiety, OCD, and possible Borderline personality. I have anger issues, which no one seems to be able to help me with, and consequently led to my divorce 7 yrs ago. Growing up I had chronic urinary tract infections, but surgery helped that. I have had horrible stomach pains since childhood, which literally drop me to the floor in pain. Doctors told me I had ovarian cysts. I had 4 laporascopic surgeries to remove small cysts and/or find nothing wrong. I was then told it was endometriosis, but after more laps they didn't find anything. Then last year, at age 29 I had a full hysterectomy with a diagosis of Adenomyosis, but get this at my post-op the doctor told me that my pathology report was negative for any abnormalities!! In other words I had a hysterectomy for NO REASON!@!#@@!! And yes, I STILL have pain!

If that weren't enough I have now been told that I am in the early stages of Rheumatoid Arthritis! Could it get any better than that?! (kidding!)

So, what do I do? I guess I'm trying the gluten free diet and I'll see what happens, but if any of you wonderful people out there have any ideas for me or my children I would LOVE to hear them.

May the Lord bless you all!

Emily

Hugs SJD - I didn't mention about my kids here - but I have posted elsewhere and it sounds like we have things in common. My 9yr old has reflux and IBS and still wets the bed + occasional mysterious skin allergies - it's my 7 yr old daughter I'm concerned more about (who doesn't have tummy issues). She has major anger issues, but it can't be considered ODD as she is a quiet little thing away from the comfort of home. We have named her mood Mr Angry, but when he is present there is no talking to him. We get hit, bitten, furniture is thrown downstairs!!! She is a sweety pie the rest of the time, lately Mr Angry has been visiting about twice a day, but on the gluten free diet he only came about once a day and I could chat with him, then last week she ate something at school from a friends lunchbox that contained soy. It was Mr Angry I picked up from school that day and he didn't take a leave of absence until well into the following day. Last night was the first night this week that the dog didn't have to take cover under the barbecue! She is allergic to strawberries (didn't need a doctor to tell me that, everytime she eats strawberries she breaks out). Mr Angry has been around since 6 months of age (she was the quietest baby) and so have her sinus issues (she had grommets when she was 18 months and her adenoids out when she was 5 but she still catches every cold and has a year round runny nose). She had selective mutism until she was 5 and still barely talks in class. Recently I had to get my girls measured for flower girls dresses. She is the average height of a 7 yr old but her chest is that of a 3 yr old and she is really bony. As she eats okay (very fussy, but something goes in even if its just rubbish) I didn't worry. But last week I decided to weigh both girls. 9 yr old is still on 10th percentile like she was as a baby. But 7 yr old who was always on 60th percentile as a tot, has now fallen off the chart as far as weight goes and her heights taken a small dip too. Am thinking of calling up our GP.

And then there's my poor Mum, had IBS since her thirties as well as hypertension, 2 strokes in her forties, since then diabetes/ cancer/ lymphodema and now a hip replacement after her hip snapped in half this year. For most of 2010 she has had constant unexplainable diarrhea and has lost about 6Kg in weight. And then there were her mother's stomach/ psych issues and then her mother's issues. My Mum, myself and 9 yr old all have stained looking teeth.

I saw my psychiatrist today - and yes, there are some really brilliant people out there in the medical profession. His take on my situation was to get a second opinion, definitely find out what the story is with the villous atrophy, but meanwhile to stick with a gluten free diet because if it works for me then does it really matter whether the process is physiological or psychological? A doctors job is to get you better, and by that he has to listen to the patient and respect that the body is that of the patients - that the medical profession needs to accept they do not have answers to everything and all that matters is that their patients get better. He acknowledged that Bipolar II patients often see improvement of symptoms on a gluten-free diet whether or not they have had a formal diagnosis of Celiacs!!

It's really great there is this support here!

[surviormom]

Hugs SJD - I didn't mention about my kids here - but I have posted elsewhere and it sounds like we have things in common. My 9yr old has reflux and IBS and still wets the bed + occasional mysterious skin allergies - it's my 7 yr old daughter I'm concerned more about (who doesn't have tummy issues). She has major anger issues, but it can't be considered ODD as she is a quiet little thing away from the comfort of home. We have named her mood Mr Angry, but when he is present there is no talking to him. We get hit, bitten, furniture is thrown downstairs!!! She is a sweety pie the rest of the time, lately Mr Angry has been visiting about twice a day, but on the gluten free diet he only came about once a day and I could chat with him, then last week she ate something at school from a friends lunchbox that contained soy. It was Mr Angry I picked up from school that day and he didn't take a leave of absence until well into the following day. Last night was the first night this week that the dog didn't have to take cover under the barbecue! She is allergic to strawberries (didn't need a doctor to tell me that, everytime she eats strawberries she breaks out). Mr Angry has been around since 6 months of age (she was the quietest baby) and so have her sinus issues (she had grommets when she was 18 months and her adenoids out when she was 5 but she still catches every cold and has a year round runny nose). She had selective mutism until she was 5 and still barely talks in class. Recently I had to get my girls measured for flower girls dresses. She is the average height of a 7 yr old but her chest is that of a 3 yr old and she is really bony. As she eats okay (very fussy, but something goes in even if its just rubbish) I didn't worry. But last week I decided to weigh both girls. 9 yr old is still on 10th percentile like she was as a baby. But 7 yr old who was always on 60th percentile as a tot, has now fallen off the chart as far as weight goes and her heights taken a small dip too. Am thinking of calling up our GP.

And then there's my poor Mum, had IBS since her thirties as well as hypertension, 2 strokes in her forties, since then diabetes/ cancer/ lymphodema and now a hip replacement after her hip snapped in half this year. For most of 2010 she has had constant unexplainable diarrhea and has lost about 6Kg in weight. And then there were her mother's stomach/ psych issues and then her mother's issues. My Mum, myself and 9 yr old all have stained looking teeth.

I saw my psychiatrist today - and yes, there are some really brilliant people out there in the medical profession. His take on my situation was to get a second opinion, definitely find out what the story is with the villous atrophy, but meanwhile to stick with a gluten free diet because if it works for me then does it really matter whether the process is physiological or psychological? A doctors job is to get you better, and by that he has to listen to the patient and respect that the body is that of the patients - that the medical profession needs to accept they do not have answers to everything and all that matters is that their patients get better. He acknowledged that Bipolar II patients often see improvement of symptoms on a gluten-free diet whether or not they have had a formal diagnosis of Celiacs!!

It's really great there is this support here!

How did you get through the selective mutism?

[GF Lover]

How did you get through the selective mutism?

This is an old thread. The member Smarts has not been active since April of 2011.  You may want to start a new topic.

 

Colleen