Newly Diagnosed With celiac disease

[happylittlemama]

I spent some time this morning reading other's stories and I am amazed at the similarities. How could so many people have similar symptoms and still be misdiagnosed? I thought I would share my story here as well.

I'm 36, married for 11 years to my husband, mother to 6 children with three of them on the autism spectrum, a homeschooler, and an Air Force veteran. I've lived a busy life and it's been good. Three days ago I was diagnosed with Celiac Disease. It sort of came as a surprise, as I had suspected it in my autistic kids, but it's one thing to suspect something and another to actually be told you have a disease. The night I got the diagnosis I removed all wheat containing items from our home and gave them to a friend. Our life is already challenging with a large family, homeschooling and autism, but when I get sick, life almost stops. We've been in this sort of mode for about 8 months now.

As I piece all the problems I've had over the years, it's clear I've been suffering with Celiac for a very long time, since childhood.

Childhood symptoms:

Anxiety

Low weight

Constipation

Sick with all kinds of respiratory infections: strep throat, pneumonia, pleurisy, asthma

Skin staph infections

Eczema that was worse in the winter

Night terrors and insomnia

Teen years:

Ovarian cysts (8 lb. ovarian cyst was removed with my left ovary and appendix ((which was ready to burst)) at age 14)

Heavy, long periods and painful cramping

TMJ

Braces on teeth worn for 5 years

Broken ankle

Painful knee joints (almost seemed arthritic)

Anorexic looking and could not gain weight

Yellow tint to skin

Started having bouts of hypoglycemia

Food allergies

Hives that were huge (sometimes covered my entire back)

Sinus allergies

Medication allergies

Eye sight got worse every year

Constipation

Kidney stones

Migraines occasionally

I joined the Air Force at 19 and got married the same year, and moved away from home. More symptoms developed because I wasn't eating as I had at home:

Excruciating pain in knees and back.

Diagnosed with scoliosis

More TMJ problems but got a mouth guard which sort of helped

More ovarian cysts

Severe Depression

Sleeping more

Diagnosed with IBS

Sharp pains in lower left side they said was from adhesions from the ovarian cyst surgery, but these usually followed bouts of constipation

Hypoglycemia that was getting worse

Had a hard time keeping my weight above 108 (military standards for my height)

Couldn't pass fitness tests

Bladder infections all the time (13 in one year)

Mononucleosis twice

I got out of the military four years later (went Reserves for the next 8) and divorced my abusive husband in the same year. I moved back home and lived with my parents. No children from that marriage, thankfully. I attributed worsening health to the stress of getting divorced and recovering from abuse.

Bad respiratory infections

More pain on left side

More bouts of IBS

Brain fog and couldn't complete thoughts or conversations

Depression

More food and seasonal allergies

I got married to a great guy and had my first son at 25 and 5 more children followed about every two years. I've had 3 miscarriages and my 6th baby had a twin, but we lost it at 8 weeks. I felt wonderful pregnant. I didn't have a lot of morning sickness and I had so much energy. However I still had severe bouts of constipation which aggravated the pain on my lower left side and this got to be debilitating. Sometimes the attacks would last for hours. While having kids in 9 years:

Hypoglycemia

Drug allergies

3-5 Migraines a week

I breast fed them all, and this was our birth control. As long as I breastfed I didn't have cycles, so no pregnancy. Once I stopped breastfeeding I was pregnant within about 3 months.

Constipation

Pale skin

Stroke like symptoms during some migraines

Exhaustion after some meals that made me go to sleep. I worried during these episodes about the safety of my kids. Thankfully nothing ever happened.

Sweating profusely

More problems with TMJ, got another guard for night.

Enamel problems: thinning, white spots on my teeth

My hair used to be straight but with each child, it got curlier

Acne

Hives

Rashes

Postpartum depression treated with Prozac

Joint pain in neck, shoulders, knees, hips, wrists and back

Lowering energy

Did two colon cleanses during this time and after each I felt really good...for about 2 months. Then the brain fog and exhaustion would return.

I managed to gain weight with the pregnancies but then kept about 10lbs after every baby, now I was considered overweight when I had spent most of my life underweight.

Ringing in my ears

Upon the diagnosis of autism in two of my kids at the time I looked into the gluten free/ milk free diets that they say will help with autism. I tried to get them tested and the doctors didn't think there was any reason to test them for Celiac. After I finally got them to do some kind test on my son, it came back negative.

My oldest was diagnosed with ADHD and Aspergers. His eyes don't work together so they gave him glasses. We started homeschooling because his anxiety and inability to focus were so high the teachers lost patience with him. He was failing Kindergarten. It was like an enhanced repeat of my childhood. At age 11, he is still wetting the bed, anxiety is through the roof, and he's medicated with Concerta (for attention) and Depakote (for violent tendencies). As a baby he had all kinds of respiratory infections to the point of by age 2 we saw his lungs had been scarred during a bout with pneumonia. He has been labeled failure to thrive and at age 11 weighs 69 lbs and is almost 5 ft. tall. My 4th child is autistic, but has had 3 traumatic brain injuries. At 9 mo. (about the time I introduced table food to him) he had a fever of 105 for a week straight that was not controlled with medications. I took him to the doctor three times that week and they dismissed him as having allergies or a virus. After the fever broke, he couldn't sit up, crawl, nurse, or do much of anything. He didn't try to crawl again, but didn't walk until he was 17 months old. There was no speech until about 3 1/2. Occasionally he had seizures. His other two traumatic brain injuries came from him falling off a chest freezer onto a tile floor at 2 1/2 and then getting knocked down on a driveway when our dog ran into the back of him. Both times he lost consciousness and had seizures. He has eczema worse than all of my kids, but it's not like what I have seen on other kids. It covers him at times. My daughter was diagnosed this year on the autism spectrum with Oppositional Defiant Disorder, but I noticed her behavior would be good or bad, depending on her diet. I thought milk was a factor, but it wasn't always consistent. She suffered from severe bouts of constipation, violent outbursts, head, back and stomach aches, hives, and respiratory infections. With all my issues and stress from my kids' problems, we decided to take a break from homeschooling and I enrolled the kids in public school. Their behaviors worsened and their health issues grew worse. My daughter had 4 respiratory infections in 4 months, my son had the worst skin rashes I had ever seen on him, it had even spread around his mouth. My oldest son was hearing voices that told him to stab knives at walls and people and to start fires. They thought he had schizophrenia. I didn't make my kids take lunches to school until their last month in school, which helped with some of the symptoms because I could control their diet somewhat. Most of our diet at that point did include a lot of wheat, but not processed foods. We couldn't afford to eat out, so we made most of our food from scratch, which did include a lot flour: homemade bread, cookies, soups, sauces, and noodles. Meats were limited to chicken or hamburger. I always had a variety of veggies and fruits with each meal.

In October 2009 I started having the left sided pain that was so intense it was causing me to throw up. The migraines continued to worsen to having to throw up for me get some relief, but they were lasting all day and not responding to medication. By December I had stomach pains that were not going away. The doctor said it was an ulcer, sent me home with Prilosec and said I'd be fine in 2 months. At this same time I realized should have been pregnant with that last baby by this time. But I had had two miscarriages, and my cycles were not predictable, sometimes 2 weeks apart, sometimes 6 weeks apart and became heavy and painful. At a physical they told me I was low in Vitamin D. A few more blood tests later they told me I had low ovarian reserve and had less than a 1% chance of getting pregnant again. This seemed odd to me seeing how for 9 years I could get pregnant easily and now not to be able to and so quickly? They told me I would be hitting menopause early. I'm only 36!

We moved in Feb. 2010 to Utah and that has been a huge blessing for us. The kids were accepted into therapy for their autism and further diagnostics. Unfortunately I seemed to deteriorate further. New symptoms were arising:

Pain around my ribs and upper abdomen

Pain on my lower left side, now lasting for days at a time

Stomach pain

Diarrhea

Constipation

Migraines

Fatigue

Cycles evened out, but no pregnancy

Bloating that was painful

Weight loss

Pain on my upper left side now that didn't go away without laying down or some pain medication

Bleeding with bowel movements

The did an EGD scope and found I had two ulcers. They did an ultrasound on my gall bladder and found it normal. They did blood tests that came back that I was severely anemic and they did liver and kidney panels, but didn't see anything worth telling me about. They did more blood work which is when they came back with the Celiac disease.

And that was three days ago. I am relieved to know what the problems are, and I'm putting my whole family on a gluten free diet. So far we have been doing ok. I don't hear about them being hungry much, as I worried that our normal snacks of crackers or muffins would be missed. My daughter has been compliant and helpful. My sons may take a while longer to notice significant improvements, but I'm happy to know that they will benefit from a gluten free diet as well. I could go on for a whole lot longer about my husband's symptoms, so maybe I will save that for another day. I had read on another post here that someone was experiencing tingling in their arms and legs a few days after going gluten free. I'm experiencing that now, and I'm still tired and have headaches, but not the migraines yet. I talked about the sudden infertility as well on here, and I've just been doing searches on Celiac and infertility. There is mention of early menopause in Celiacs. I am curious if that is reversible if you stay strict to your diet? We will continue to homeschool, not just because it has worked well for our family, but I feel more inclined towards that with having to keep to a gluten free diet for most of the kids. I had also seen on here someone posted that they were a leaky baby. My fifth baby was like that. Constantly. He is now four, with ADHD tendencies but he runs around with a bloated tummy most of the time, can't sleep and talks with a lisp. He's also not potty trained because he just can't make it to the bathroom on time.

Thanks for reading this far. I know it's a lot. Thanks for having a forum here too. It has been helpful for me to read and compare notes.

[ravenwoodglass]

I am glad you were finally diagnosed. Now you can heal. I think you are wise to make the household gluten free. Be aware though that once the kids are gluten free they will show a false negative with testing. It may not matter now but it could when they get older and go off to college. Doctors advise the whole family be tested when one is diagnosed. It might not be a bad idea to get the kids tested again before you get fully into the diet.

As you have seen you found a great place for info and support. I hope you heal quickly.

[T.H.]

Congratulations on your diagnosis!

It feels kind of strange, doesn't it, to be HAPPY to be diagnosed with something? But I swear, with celiacs, it's such a relief to have an answer, I think.

I'm a homeschooling mom of two who was diagnosed just last year. My daughter came back positive, my son negative, but we've noticed a huge difference with both as we all went gluten free.

This might be a bit annoying, but after just having gone through this, where my children were having emotional and possible learning issues as their main problem, i thought I'd pass on what I've been finding out in the last few months of research. Might save you some time!

So, quick rundown of possibly useful stuff when looking for answers with your little ones.

--My GI sort of specializes in celiacs, and he says the following to me:

1. His celiac patients seem more likely to have other food allergies, sensitivities, and intolerances. He recommends all his patients get tested, and keep a food diary.

2. His celiac patients seem more sensitive to dyes and preservatives, so he recommends his patients avoid foods with that.

3. His celiac patients seem to be more sensitive to genetically modified food. He was noticing abnormal growth patterns in his patients' stomachs, and it matched the growth patterns in rats who were in studies for genetically modified grains. So, again, he tries to get his patients to eat mostly organic foods, as organics do not contain genetically modified food.

A couple of recent studies I just came across last month were finding connections between pesticide residues on fruits and veggies, and ADHD type symptoms in children. When fed organic foods, the residue levels dropped, and so did the ADHD symptoms.

A condition called (dietary) Fructose malabsorption can cause a lot of gut issues and emotional outbursts (because the kids don't absorb enough tryptophan and so can't make enough seratonin and melatonin). They don't know why it happens, but it does seem to correlate with people who have had other gut conditions, like celiac disease. The fix for it is a change in diet, and the diet for this involves fruits, meats, nuts, and veggies, but there is info. on the web that you can find for it, now.

For us, once I took the kids off gluten, they still had trouble. It wasn't until we started a food journal and took them off the 8 major allergens that we started finding all the answers. We're slowly working towards the complete picture, but the change in our kids is huge.

In either case, I thought some of this information might be of some use for you, and I wish you well on your journey back to health. I'm 10 months since diagnosis, and while I'm still looking for full answers, the difference in our lives is truly amazing in the best possible way. I hope it will be the same for you!

I spent some time this morning reading other's stories and I am amazed at the similarities. How could so many people have similar symptoms and still be misdiagnosed? I thought I would share my story here as well.

I'm 36, married for 11 years to my husband, mother to 6 children with three of them on the autism spectrum, a homeschooler, and an Air Force veteran. I've lived a busy life and it's been good. Three days ago I was diagnosed with Celiac Disease. It sort of came as a surprise, as I had suspected it in my autistic kids, but it's one thing to suspect something and another to actually be told you have a disease. The night I got the diagnosis I removed all wheat containing items from our home and gave them to a friend. Our life is already challenging with a large family, homeschooling and autism, but when I get sick, life almost stops. We've been in this sort of mode for about 8 months now.

As I piece all the problems I've had over the years, it's clear I've been suffering with Celiac for a very long time, since childhood.

Childhood symptoms:

Anxiety

Low weight

Constipation

Sick with all kinds of respiratory infections: strep throat, pneumonia, pleurisy, asthma

Skin staph infections

Eczema that was worse in the winter

Night terrors and insomnia

Teen years:

Ovarian cysts (8 lb. ovarian cyst was removed with my left ovary and appendix ((which was ready to burst)) at age 14)

Heavy, long periods and painful cramping

TMJ

Braces on teeth worn for 5 years

Broken ankle

Painful knee joints (almost seemed arthritic)

Anorexic looking and could not gain weight

Yellow tint to skin

Started having bouts of hypoglycemia

Food allergies

Hives that were huge (sometimes covered my entire back)

Sinus allergies

Medication allergies

Eye sight got worse every year

Constipation

Kidney stones

Migraines occasionally

I joined the Air Force at 19 and got married the same year, and moved away from home. More symptoms developed because I wasn't eating as I had at home:

Excruciating pain in knees and back.

Diagnosed with scoliosis

More TMJ problems but got a mouth guard which sort of helped

More ovarian cysts

Severe Depression

Sleeping more

Diagnosed with IBS

Sharp pains in lower left side they said was from adhesions from the ovarian cyst surgery, but these usually followed bouts of constipation

Hypoglycemia that was getting worse

Had a hard time keeping my weight above 108 (military standards for my height)

Couldn't pass fitness tests

Bladder infections all the time (13 in one year)

Mononucleosis twice

I got out of the military four years later (went Reserves for the next 8) and divorced my abusive husband in the same year. I moved back home and lived with my parents. No children from that marriage, thankfully. I attributed worsening health to the stress of getting divorced and recovering from abuse.

Bad respiratory infections

More pain on left side

More bouts of IBS

Brain fog and couldn't complete thoughts or conversations

Depression

More food and seasonal allergies

I got married to a great guy and had my first son at 25 and 5 more children followed about every two years. I've had 3 miscarriages and my 6th baby had a twin, but we lost it at 8 weeks. I felt wonderful pregnant. I didn't have a lot of morning sickness and I had so much energy. However I still had severe bouts of constipation which aggravated the pain on my lower left side and this got to be debilitating. Sometimes the attacks would last for hours. While having kids in 9 years:

Hypoglycemia

Drug allergies

3-5 Migraines a week

I breast fed them all, and this was our birth control. As long as I breastfed I didn't have cycles, so no pregnancy. Once I stopped breastfeeding I was pregnant within about 3 months.

Constipation

Pale skin

Stroke like symptoms during some migraines

Exhaustion after some meals that made me go to sleep. I worried during these episodes about the safety of my kids. Thankfully nothing ever happened.

Sweating profusely

More problems with TMJ, got another guard for night.

Enamel problems: thinning, white spots on my teeth

My hair used to be straight but with each child, it got curlier

Acne

Hives

Rashes

Postpartum depression treated with Prozac

Joint pain in neck, shoulders, knees, hips, wrists and back

Lowering energy

Did two colon cleanses during this time and after each I felt really good...for about 2 months. Then the brain fog and exhaustion would return.

I managed to gain weight with the pregnancies but then kept about 10lbs after every baby, now I was considered overweight when I had spent most of my life underweight.

Ringing in my ears

Upon the diagnosis of autism in two of my kids at the time I looked into the gluten free/ milk free diets that they say will help with autism. I tried to get them tested and the doctors didn't think there was any reason to test them for Celiac. After I finally got them to do some kind test on my son, it came back negative.

My oldest was diagnosed with ADHD and Aspergers. His eyes don't work together so they gave him glasses. We started homeschooling because his anxiety and inability to focus were so high the teachers lost patience with him. He was failing Kindergarten. It was like an enhanced repeat of my childhood. At age 11, he is still wetting the bed, anxiety is through the roof, and he's medicated with Concerta (for attention) and Depakote (for violent tendencies). As a baby he had all kinds of respiratory infections to the point of by age 2 we saw his lungs had been scarred during a bout with pneumonia. He has been labeled failure to thrive and at age 11 weighs 69 lbs and is almost 5 ft. tall. My 4th child is autistic, but has had 3 traumatic brain injuries. At 9 mo. (about the time I introduced table food to him) he had a fever of 105 for a week straight that was not controlled with medications. I took him to the doctor three times that week and they dismissed him as having allergies or a virus. After the fever broke, he couldn't sit up, crawl, nurse, or do much of anything. He didn't try to crawl again, but didn't walk until he was 17 months old. There was no speech until about 3 1/2. Occasionally he had seizures. His other two traumatic brain injuries came from him falling off a chest freezer onto a tile floor at 2 1/2 and then getting knocked down on a driveway when our dog ran into the back of him. Both times he lost consciousness and had seizures. He has eczema worse than all of my kids, but it's not like what I have seen on other kids. It covers him at times. My daughter was diagnosed this year on the autism spectrum with Oppositional Defiant Disorder, but I noticed her behavior would be good or bad, depending on her diet. I thought milk was a factor, but it wasn't always consistent. She suffered from severe bouts of constipation, violent outbursts, head, back and stomach aches, hives, and respiratory infections. With all my issues and stress from my kids' problems, we decided to take a break from homeschooling and I enrolled the kids in public school. Their behaviors worsened and their health issues grew worse. My daughter had 4 respiratory infections in 4 months, my son had the worst skin rashes I had ever seen on him, it had even spread around his mouth. My oldest son was hearing voices that told him to stab knives at walls and people and to start fires. They thought he had schizophrenia. I didn't make my kids take lunches to school until their last month in school, which helped with some of the symptoms because I could control their diet somewhat. Most of our diet at that point did include a lot of wheat, but not processed foods. We couldn't afford to eat out, so we made most of our food from scratch, which did include a lot flour: homemade bread, cookies, soups, sauces, and noodles. Meats were limited to chicken or hamburger. I always had a variety of veggies and fruits with each meal.

In October 2009 I started having the left sided pain that was so intense it was causing me to throw up. The migraines continued to worsen to having to throw up for me get some relief, but they were lasting all day and not responding to medication. By December I had stomach pains that were not going away. The doctor said it was an ulcer, sent me home with Prilosec and said I'd be fine in 2 months. At this same time I realized should have been pregnant with that last baby by this time. But I had had two miscarriages, and my cycles were not predictable, sometimes 2 weeks apart, sometimes 6 weeks apart and became heavy and painful. At a physical they told me I was low in Vitamin D. A few more blood tests later they told me I had low ovarian reserve and had less than a 1% chance of getting pregnant again. This seemed odd to me seeing how for 9 years I could get pregnant easily and now not to be able to and so quickly? They told me I would be hitting menopause early. I'm only 36!

We moved in Feb. 2010 to Utah and that has been a huge blessing for us. The kids were accepted into therapy for their autism and further diagnostics. Unfortunately I seemed to deteriorate further. New symptoms were arising:

Pain around my ribs and upper abdomen

Pain on my lower left side, now lasting for days at a time

Stomach pain

Diarrhea

Constipation

Migraines

Fatigue

Cycles evened out, but no pregnancy

Bloating that was painful

Weight loss

Pain on my upper left side now that didn't go away without laying down or some pain medication

Bleeding with bowel movements

The did an EGD scope and found I had two ulcers. They did an ultrasound on my gall bladder and found it normal. They did blood tests that came back that I was severely anemic and they did liver and kidney panels, but didn't see anything worth telling me about. They did more blood work which is when they came back with the Celiac disease.

And that was three days ago. I am relieved to know what the problems are, and I'm putting my whole family on a gluten free diet. So far we have been doing ok. I don't hear about them being hungry much, as I worried that our normal snacks of crackers or muffins would be missed. My daughter has been compliant and helpful. My sons may take a while longer to notice significant improvements, but I'm happy to know that they will benefit from a gluten free diet as well. I could go on for a whole lot longer about my husband's symptoms, so maybe I will save that for another day. I had read on another post here that someone was experiencing tingling in their arms and legs a few days after going gluten free. I'm experiencing that now, and I'm still tired and have headaches, but not the migraines yet. I talked about the sudden infertility as well on here, and I've just been doing searches on Celiac and infertility. There is mention of early menopause in Celiacs. I am curious if that is reversible if you stay strict to your diet? We will continue to homeschool, not just because it has worked well for our family, but I feel more inclined towards that with having to keep to a gluten free diet for most of the kids. I had also seen on here someone posted that they were a leaky baby. My fifth baby was like that. Constantly. He is now four, with ADHD tendencies but he runs around with a bloated tummy most of the time, can't sleep and talks with a lisp. He's also not potty trained because he just can't make it to the bathroom on time.

Thanks for reading this far. I know it's a lot. Thanks for having a forum here too. It has been helpful for me to read and compare notes.