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Allise

My Effects..(Weight Gain, Hair loss, Rash, Depression/Anxiety, Fatigue)

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Hello, I recently got diagnosed with Celiac Disease around a month and half ago. I have been dealing with symptoms for two years (little did I know). When I was around 13, I started to gain a lot of weight out of nowhere, my hair started thinning and falling out, I developed a rash on my arms (Keratosis Pilarious), became very depressed and anxious constantly, had a never-ending stomach, became extremely tired all the time, and frankly never felt well. I had been dealing with minor knee problems up until this time but they quickly escalated due to the influx in weight and lack of muscle. i  ended up having my first knee surgery in 7th grade. Meanwhile all of these symptoms were becoming more and more evident I was undergoing testing, where I was told it was all due to puberty. Heartbroken to know there was no answer to be given I had to except this new version of myself.

Fast forward two years later where I was still dealing with the same problems, they did additional testing (only because my mother urged them to) and found I was iron deficient, however I was not anemic (hemoglobin was low but not terrible) even though I had .002 values. I started to take supplements and it made me sicker.

Luckily for me my mother was relentless in finding an answer. We went to Vanderbilt and saw a Endocrinologist but once again my thyroid was in normal range. The next day I was scheduled for my second knee surgery which would be caused by an abundance of scar tissue caused by none other than inflammation. The doctor told me that I needed to go to a psychologist, which absolutely crushed me. I had no hope for ever getting any relief from not even one of my symptoms. My mother had other plans. She requested a Celiac panel, and the doctor clearly saw that as a psychotic move and wouldn't consider me for it because I am not underweight. The panel came back positive to my surprise, nevertheless there was the pandemic so naturally things took much longer to process. I was confirmed Celiac a month and 1/2 ago and I hope that some of what I am dealing with clears up. There is nothing like taking a shower and pulling out clumps of hair at age 15 and working out everyday and eating healthy for months and actually gaining weight. It definitely did a number on my self-confidence and mental stability.  Let me know if this helps anyone or anyone has any advice for me! It would be much appreciated, I am still very new to this.

Moral of the story: do not give up on yourself just because your doctors have.  

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Celiac.com Sponsor (A8):

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Hearing your story is very difficult for me because I spent the past 25 years running this site to help people avoid what you just went through to get diagnosed, so it’s hard for me to hear that this could still be happening today. Stories like yours were very common 25 years ago, but my hope was that doctors would be doing much better now, and apparently for some of them this is not the case.

Knee surgery for inflammation? Did they first even try anti-inflammatory medications? 

The most important thing in the end of course is that you finally have your answer, even after your doctor tried to wave it off as a psychological problem. Can I ask how old was your doctor? The idea that you must be underweight to have celiac disease is so old that I’m  hoping that he/she is over 60, but who knows.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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1 hour ago, Scott Adams said:

Hearing your story is very difficult for me because I spent the past 25 years running this site to help people avoid what you just went through to get diagnosed, so it’s hard for me to hear that this could still be happening today. Stories like yours were very common 25 years ago, but my hope was that doctors would be doing much better now, and apparently for some of them this is not the case.

Knee surgery for inflammation? Did they first even try anti-inflammatory medications? 

The most important thing in the end of course is that you finally have your answer, even after your doctor tried to wave it off as a psychological problem. Can I ask how old was your doctor? The idea that you must be underweight to have celiac disease is so old that I’m  hoping that he/she is over 60, but who knows.

Thank you for doing what you do. So many people get waved off just because of there size and the lack of recognition of the disease life affecting issues like fertility. 

In terms of the knee surgery had been dealing with issues since I was 12 years old from a fall while dancing. The injury was never able to heal correctly and caused more issues that eventually lead to the first surgery. A similar thing happened to the second go around. I had a simple minor injury that progressively got worse. I waited for four months getting injections and such but there was no relief so at that point they decided to proceed with surgery. When they went in they found a strange amount of scar tissue, which was blocking my movement and causing pain. 

My doctors were all in there late 30's to early 40's. The more I have read about people in similar situations the more I see a common trend. My hope is that Celiac Disease can be recognized in people based on more than just their weight. 

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I am glad that your mother kept advocating for you!   Be patient, it takes time to heal!  Think about creating a 504 plan for school.  It might be prudent to have in place before going off to university.  My daughter’s friend found in useful in High School.  She was in culinary when she was diagnosed.  Her teacher worked out a way for her to safely complete the program.  Now (was...due to COVID) she is living in a dorm and her school is doing a good job keeping her safe.  
 

https://celiac.org/main/wp-content/uploads/2015/11/504-Plan-Model-Template-Completed.pdf


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Recently we ran an older article on someone's battle with health issues and gluten. Unfortunately the author did not mention the specific tests that were done, but the person who wrote it finally found relief from a multitude of symptoms, despite negative tests for celiac disease. They likely fall into the non-celiac wheat sensitivity category, but in any case, here is the first comment that came in on that article, which claims their issues were all "Psychosomatic". 

Unfortunately this viewpoint is still very common, but I find the fact that younger doctors who still don't know the basic facts about celiac disease--that many have new or no symptoms, can be obese, underweight, or normal weight, deeply disturbing. They should have learned this in medical school, as it's been common knowledge now for at least 15 years.

 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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15 hours ago, Allise said:

Hello, I recently got diagnosed with Celiac Disease around a month and half ago. I have been dealing with symptoms for two years (little did I know). When I was around 13, I started to gain a lot of weight out of nowhere, my hair started thinning and falling out, I developed a rash on my arms (Keratosis Pilarious), became very depressed and anxious constantly, had a never-ending stomach, became extremely tired all the time, and frankly never felt well. I had been dealing with minor knee problems up until this time but they quickly escalated due to the influx in weight and lack of muscle. i  ended up having my first knee surgery in 7th grade. Meanwhile all of these symptoms were becoming more and more evident I was undergoing testing, where I was told it was all due to puberty. Heartbroken to know there was no answer to be given I had to except this new version of myself.

Fast forward two years later where I was still dealing with the same problems, they did additional testing (only because my mother urged them to) and found I was iron deficient, however I was not anemic (hemoglobin was low but not terrible) even though I had .002 values. I started to take supplements and it made me sicker.

Luckily for me my mother was relentless in finding an answer. We went to Vanderbilt and saw a Endocrinologist but once again my thyroid was in normal range. The next day I was scheduled for my second knee surgery which would be caused by an abundance of scar tissue caused by none other than inflammation. The doctor told me that I needed to go to a psychologist, which absolutely crushed me. I had no hope for ever getting any relief from not even one of my symptoms. My mother had other plans. She requested a Celiac panel, and the doctor clearly saw that as a psychotic move and wouldn't consider me for it because I am not underweight. The panel came back positive to my surprise, nevertheless there was the pandemic so naturally things took much longer to process. I was confirmed Celiac a month and 1/2 ago and I hope that some of what I am dealing with clears up. There is nothing like taking a shower and pulling out clumps of hair at age 15 and working out everyday and eating healthy for months and actually gaining weight. It definitely did a number on my self-confidence and mental stability.  Let me know if this helps anyone or anyone has any advice for me! It would be much appreciated, I am still very new to this.

Moral of the story: do not give up on yourself just because your doctors have.  

Allise,

I like your Moral of the Story.....

I found many of my co-morbid conditions could be attributed to existing vitamin deficiencies I developed because of my Celiac disease.

Here are some articles that can explain how existing Vitamin deficiencies could explain your Iron Deficient Anemia, skin issues and hair loss....

Entitled "The Role of Vitamins and Minerals in Hair Loss: A Review"

https://pubmed.ncbi.nlm.nih.gov/30547302/

"These Deficiencies May Lead to Thinning Hair.."

https://www.progressivehealth.com/the-facts-about-vitamin-deficiency-and-hair-loss.htm

"15 Signs and Symptoms of Vitamin C Deficiency"

https://www.healthline.com/nutrition/vitamin-c-deficiency-symptoms

If your hair has a corkscrew appearance this might be a sign of undiagnosed Scurvy....

Nutritional deficiencies are not well recognized in the Western world....because we don't see them commonly in the US....when it does happen they "Hide in Plain Sight"....

Either way taking Vitamin C or eating Vitamin C rich foods can help you absorb your Iron better.

And the severe Iron Deficiency can be triggering your hair loss...

You might also have low or no stomach acid leading to low Iron levels...see this research entitled

"Is Achlorhydria a Cause of Iron Deficiency Anemia"

https://pubmed.ncbi.nlm.nih.gov/25994564/

Try taking some Baking Soda with water to see if it causes you to burp....(read the full article....it explains the baking soda test towards the bottom of the article)

See this Dr. Jockers online article that explains how to used Baking Soda to test how low your stomach acid is.

https://drjockers.com/5-ways-test-stomach-acid-levels/

Mine was low too! and the doctor's never thought to test for it!

If the baking soda doesn't cause you to burp in 5 minutes your stomach acid is probably too low to absorb Iron from your diet....

I hope this is helpful but it is not medical advise.

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

Posterboy by the grace of God,

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18 hours ago, Allise said:

Hello, I recently got diagnosed with Celiac Disease around a month and half ago. I have been dealing with symptoms for two years (little did I know). When I was around 13, I started to gain a lot of weight out of nowhere, my hair started thinning and falling out, I developed a rash on my arms (Keratosis Pilarious), became very depressed and anxious constantly, had a never-ending stomach, became extremely tired all the time, and frankly never felt well. I had been dealing with minor knee problems up until this time but they quickly escalated due to the influx in weight and lack of muscle. i  ended up having my first knee surgery in 7th grade. Meanwhile all of these symptoms were becoming more and more evident I was undergoing testing, where I was told it was all due to puberty. Heartbroken to know there was no answer to be given I had to except this new version of myself.

Fast forward two years later where I was still dealing with the same problems, they did additional testing (only because my mother urged them to) and found I was iron deficient, however I was not anemic (hemoglobin was low but not terrible) even though I had .002 values. I started to take supplements and it made me sicker.

Luckily for me my mother was relentless in finding an answer. We went to Vanderbilt and saw a Endocrinologist but once again my thyroid was in normal range. The next day I was scheduled for my second knee surgery which would be caused by an abundance of scar tissue caused by none other than inflammation. The doctor told me that I needed to go to a psychologist, which absolutely crushed me. I had no hope for ever getting any relief from not even one of my symptoms. My mother had other plans. She requested a Celiac panel, and the doctor clearly saw that as a psychotic move and wouldn't consider me for it because I am not underweight. The panel came back positive to my surprise, nevertheless there was the pandemic so naturally things took much longer to process. I was confirmed Celiac a month and 1/2 ago and I hope that some of what I am dealing with clears up. There is nothing like taking a shower and pulling out clumps of hair at age 15 and working out everyday and eating healthy for months and actually gaining weight. It definitely did a number on my self-confidence and mental stability.  Let me know if this helps anyone or anyone has any advice for me! It would be much appreciated, I am still very new to this.

Moral of the story: do not give upeen on yourself just because your doctors have.  

Thank you for your story. I have been feeling unwell all my adult life. I'm now 45 and I've just been diagnosed after I asked my doc for tests. I've been suffering from Panic attacks and Depression since the age of 17. I felt all along that there was physical reasons contributing to my mental health. I too am over weight and ironically have been craving gluten containing foods all along. 

Best Regards 

Paul. 

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4 hours ago, Paul-75 said:

Thank you for your story. I have been feeling unwell all my adult life. I'm now 45 and I've just been diagnosed after I asked my doc for tests. I've been suffering from Panic attacks and Depression since the age of 17. I felt all along that there was physical reasons contributing to my mental health. I too am over weight and ironically have been craving gluten containing foods all along. 

Best Regards 

Paul. 

I hope you find some relief in the coming months. I find it so bizarre something as simple as bread has been treated like poison in my body. Thank you for sharing your story. It is hard as a teenager to hear doctors blame your symptoms on your mental state especially when you don't function the way a normal kid does. Best of luck with the lifestyle change, hopefully it'll make all the difference.

Sincerely, 

Allise. 

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10 hours ago, Scott Adams said:

Recently we ran an older article on someone's battle with health issues and gluten. Unfortunately the author did not mention the specific tests that were done, but the person who wrote it finally found relief from a multitude of symptoms, despite negative tests for celiac disease. They likely fall into the non-celiac wheat sensitivity category, but in any case, here is the first comment that came in on that article, which claims their issues were all "Psychosomatic". 

Unfortunately this viewpoint is still very common, but I find the fact that younger doctors who still don't know the basic facts about celiac disease--that many have new or no symptoms, can be obese, underweight, or normal weight, deeply disturbing. They should have learned this in medical school, as it's been common knowledge now for at least 15 years.

 

I truly believe that some doctors are stuck in the knowledge that symptoms should be a certain way and a certain way only. Unfortunately for people like me and many others, it seems much easier for some doctors to simply deny the possibility than to reach further into the issue at hand. This issue can leave so many in dark and lead them to think that the problems that they feel aren't real simply because a test comes back negative. That shouldn't mean that all that can be done has been done and you can blame on the mental state of a person. I feel as if I am preaching to the choir, but this information leaves me disheartened to hear of other people accepting their symptoms because a blind doctor couldn't see beyond their medical textbook from 20 years ago.

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