[mynvrendngbutterflyjourney]

Hi everyone I am new here. I had an EGD and colonoscopy done last month because i had an abnormal CT scan result when I was at the ER in Feb. It showed swollen lymph nodes in intestine and terminal illeum problems as well as others. it suggested crohn's disease.

For some history here, I was failure to thrive as an infant and my medical records ( I have mine from birth because I was a miltary child) show that I was hospitalized for weeks at a time for diarrhea. One page says "patient has had diarhea since birth." As I went through puberty later I had more problems, I became chronically constioated,had to see a nutritionist because I eatlittle meat as well. I have had anemia since birth. I also began having chonic pain and I have had chronic UTI's and kidney infections since birth. All of my pregnancies were horribly complicated and induced early, I was hospitalized for a month during one because of a kidney infection that would not go away even with IV antibiotics in the hospital so they induced me early because I developed eclampsia as well. I had gestatopnal diabetes, blood pressure in the 250's over 140's with my 2nd pregnancy and was hospitalized on bed rest then induced again when I developed eclampsia and my BP went higher. My 3rd was a mix of the first two pregnancies complications and I was induced early as well. I miscarried before my first as well.

The past 3 years have been very difficult I have been "diagnosed" with Hashimoto's thyroiditis, fibromyalgia, psoriasis and psoriatic arthritis, spinal stenosis,DDD &lumbar herniations,Narcolepsy, non diabetic hypoglycemia, malabsorption, VIt D, Vit E & b12 deficiency, Addrenal insufficiency, complicated migraines and my rheumatologist as well as other doctors have been back and forth between "MS and LUPUS" for sometime and are trying to do a lupus work up now. Also gastritis and reflux

I also have Reflex sympathetic dystrophy in my right leg and get weekly nerve blocks to help with that.

Thank you for listening- so my questions- my sleep specialist (an amazing Dr) recommended I go on a gluten free diet after an exam one day and reviewing some of my unresolved/undiagnosed problems, ( he always seems to help when other doctors can't figure anything out He even called my gastroenterologist to express his concern of Celiacs because I was going in for the EGD/Colonoscopy that week. He requested they do a small bowel biopsy. Well, after my tests the Dr told me the same day that I had inflammation in my stomach and esophagus and said I should avoid caffeine and dairy. ( I already knew i was lactose intolerant as a child/teen but still consumed it stubbornly) So I gave up my beloved coffee and soda and lactose too. He called me and said the biopsy was negative and I did not have celiacs. By the time he called I had already gone gluten-free and my husband suggested the whole family do it to make it easier so we have. Well, the same week we went to the Warm Mineral Springs in Northport, Fl (fountain of youth) because it has the highest mineral content in the USA and hoped it would help with my pain ( which it did) My psoriasis completely disappeared that week! Not one sign that I ever had it ! I took enbrel for months and it never went away but now it is gone and my clear is soft smooth and clear, my rheumatologist saw me that week and kept rubbing my arms in disbelief.

So I wonder now if it was the water of going Gluten Free? at my follow up I told my sleep specialist that th other dr sai I do not have celiacs and he said he still thinks I may- i have all the symptoms and he says without the blood testing they can not say I do not have it. He also thinks the psoriasis going away is from going gluten-free.

Has anyone had an experience like this? Could it still be celiacs with a negative biopsy?

I also noticed my 5 yr old went through withdrawals when he went on the diet and he has been having behavioral problems, most recently we were referred to a developmental pediatric specialist because he has a high IQ/gifted but is socially delayed, the drs tossed around a lot of "possible" labels including ADHD and Aspergers. When he went gluten-free he threw a tantrum one night screaming and shaking his fists yelling, " GIVE ME BREAD NOW!" It was as if he was addicted to it!

Any advice would be greatly appreciated as I am pretty new to all this and dealing with several other health conditions makes it hard to sort this out.

thank you for reading my long post.

[mushroom]

mynvrendngbutterflyjourney, on Apr 30 2009, 04:08 AM, said:

Hi everyone I am new here. I had an EGD and colonoscopy done last month because i had an abnormal CT scan result when I was at the ER in Feb. It showed swollen lymph nodes in intestine and terminal illeum problems as well as others. it suggested crohn's disease.

For some history here, I was failure to thrive as an infant and my medical records ( I have mine from birth because I was a miltary child) show that I was hospitalized for weeks at a time for diarrhea. One page says "patient has had diarhea since birth." As I went through puberty later I had more problems, I became chronically constioated,had to see a nutritionist because I eatlittle meat as well. I have had anemia since birth. I also began having chonic pain and I have had chronic UTI's and kidney infections since birth. All of my pregnancies were horribly complicated and induced early, I was hospitalized for a month during one because of a kidney infection that would not go away even with IV antibiotics in the hospital so they induced me early because I developed eclampsia as well. I had gestatopnal diabetes, blood pressure in the 250's over 140's with my 2nd pregnancy and was hospitalized on bed rest then induced again when I developed eclampsia and my BP went higher. My 3rd was a mix of the first two pregnancies complications and I was induced early as well. I miscarried before my first as well.

The past 3 years have been very difficult I have been "diagnosed" with Hashimoto's thyroiditis, fibromyalgia, psoriasis and psoriatic arthritis, spinal stenosis,DDD &lumbar herniations,Narcolepsy, non diabetic hypoglycemia, malabsorption, VIt D, Vit E & b12 deficiency, Addrenal insufficiency, complicated migraines and my rheumatologist as well as other doctors have been back and forth between "MS and LUPUS" for sometime and are trying to do a lupus work up now. Also gastritis and reflux

I also have Reflex sympathetic dystrophy in my right leg and get weekly nerve blocks to help with that.

Thank you for listening- so my questions- my sleep specialist (an amazing Dr) recommended I go on a gluten free diet after an exam one day and reviewing some of my unresolved/undiagnosed problems, ( he always seems to help when other doctors can't figure anything out He even called my gastroenterologist to express his concern of Celiacs because I was going in for the EGD/Colonoscopy that week. He requested they do a small bowel biopsy. Well, after my tests the Dr told me the same day that I had inflammation in my stomach and esophagus and said I should avoid caffeine and dairy. ( I already knew i was lactose intolerant as a child/teen but still consumed it stubbornly) So I gave up my beloved coffee and soda and lactose too. He called me and said the biopsy was negative and I did not have celiacs. By the time he called I had already gone gluten-free and my husband suggested the whole family do it to make it easier so we have. Well, the same week we went to the Warm Mineral Springs in Northport, Fl (fountain of youth) because it has the highest mineral content in the USA and hoped it would help with my pain ( which it did) My psoriasis completely disappeared that week! Not one sign that I ever had it ! I took enbrel for months and it never went away but now it is gone and my clear is soft smooth and clear, my rheumatologist saw me that week and kept rubbing my arms in disbelief.

So I wonder now if it was the water of going Gluten Free? at my follow up I told my sleep specialist that th other dr sai I do not have celiacs and he said he still thinks I may- i have all the symptoms and he says without the blood testing they can not say I do not have it. He also thinks the psoriasis going away is from going gluten-free.

Has anyone had an experience like this? Could it still be celiacs with a negative biopsy?

I also noticed my 5 yr old went through withdrawals when he went on the diet and he has been having behavioral problems, most recently we were referred to a developmental pediatric specialist because he has a high IQ/gifted but is socially delayed, the drs tossed around a lot of "possible" labels including ADHD and Aspergers. When he went gluten-free he threw a tantrum one night screaming and shaking his fists yelling, " GIVE ME BREAD NOW!" It was as if he was addicted to it!

Any advice would be greatly appreciated as I am pretty new to all this and dealing with several other health conditions makes it hard to sort this out.

thank you for reading my long post.

Welcome to the forum.

To me, your symptoms are shouting "celiac"; I'm not sure why your doctors can't hear it:

failure to thrive as a child
anemia
diarrhea and constipation
kidney infections and UTI's
miscarriage and difficult pregnancies
Hashimoto's
fibromyalgia
psoriatic arthritis
Vit D and B12 deficiency
hypoglycemia
adrenal insufficiency
neurological symptoms
gastritis and reflux
inflamed GI system
and
psoriasis clearing with gluten free (lucky thing, you)
also
possible child with celiac too?? ADHD/Aspergers?? behavioural problems, withdrawal symptoms from gluten

If you google any of these topics on the forum you will find lengthy discussions about all of them. Very few people have that many. All together??...wow!

Biopsies often return false negatives, if they don't sample the right spot (damage can be patchy) or if you have done insufficient damage (yet) for the villi to be seriously damaged (on a scale of 1-4.-- four being total destruction of the villi--you have to be a 3 for a positive diagnosis).

How are your other symptoms faring gluten free, or is it too soon to say?

If I were you I would do exactly what you have done and put the whole family gluten free. There is one thing you might consider--the genetic testing to see if you carry any of the known celiac genes. While this would not be diagnostic it would be a definite indicator that the diagnosis is possible for both you and your son, since it is genetic. Any one else in your family have these kinds of problems? I would also insist that they run the celiac blood panel for your son if he has not been gluten free for too long--you need to be eating gluten to still have the antibodies that the tests measure.

Take care and good luck with further remission of your symptoms (and your son's). .