Newly diagnosed, sharing my experience for others

[rt-116]

Hello everybody. I frequently used this forum prior to being diagnosed and appreciated every bit of advice and similar experiences I could find. So I've created an account to give back and tell my story, in the hope that if someone out there stumbles across my post one day, maybe it can offer reassurance as did so many others on here for me.

I am a 26 year old female diagnosed with coeliac disease (by blood test and endoscopy - results of the latter came yesterday). Otherwise healthy.

I have been eating gluten free for 2 weeks (since endoscopy was completed). No noticeable improvements yet but I guess it's early days!

Symptoms began in June 2019 when I started eating a vegetarian diet. I guess I could have had coeliac for longer than this, but the fact I had dramatically changed my diet led me to ignore my symptoms for longer than I may have ordinarily. Looking back, I can see I was incorporating a lot more bread, pasta cous cous etc. into my diet, and it was over the next few months I really noticed the following:

- Diarrhoea and very loose stools, particularly in the mornings

- Weight loss

- Stomach pain (although not drastically painful)

- Occasional bloating

- Increased anxiety and low mood, tearfulness, irritability

- General fatigue and tiredness

- Blood test showed anaemia 

I went for a tTG blood test in October and was told it was extremely likely I had coeliac disease. I was shocked! I was expecting I had IBS or my diet or anxiety were causing the symptoms. I was also quite worried about cancer. I didn't want to 'get my hopes up' that there was a less concerning explanation for my symptoms. It also felt like such a coincidence to have happened after the diet change. So at this point I stopped the vegetarian diet, and continued to eat gluten in anticipation for the endoscopy.

Over the next few months the symptoms above persisted (despite reverting back to my usual meat and dairy contained diet, so I was more convinced here that something else was at play!)

I also noticed other symptoms which I cannot say 100% are due to coeliac, but ones I attributed to coeliac in some way (i.e. lacking vitamins). These are the symptoms I would extensively search for on this forum to try and see if anyone else had anything similar:

- Twitches in my upper and lower eyelids

- Occasional tingles in my face, fingers etc. These were very intermittent.

- A very itchy, stinging anus after bowel movements and a very slight leak 30-60min after bowel movements. Even after wiping clean, around an hour later I would find I needed to wipe a small amount again. I have really struggled with this one and have not seen much discussion about it. I have been examined down there and been told there are no hemorrhoids, lumps or any concerns etc. So I am hoping this is coeliac related and with general gut repair and health improvements, this might calm down. I would also be really interested to hear from anyone who suffered with this. In addition, whether anyone suffers with this due to a lactose intolerance or intolerance to other foods etc - eg onions/ curries. I am wondering whether to omit certain foods.

- Breast pain, particularly a few weeks before my period. I feel this is a normal hormonal symptom to experience but it has become more noticeable

My endoscopy was in January 2020 (6 months after noticing symptoms). I got the results yesterday - confirmed coeliac and showed no other problems. I am due to see a dietician and have a bone density scan soon. I am now looking for any tips on how to aid recovery, wondering what vitamins are best to take and what foods are tasty to eat!

So that's my story. Sorry for the length of the post! Hope it might help anyone with similar symptoms wondering 'is this coeliac' feel a bit reassured that it might be. Happy to answer questions of anyone who has yet to receive a diagnosis. I was very stressed and anxious during the lead up to all my tests and results because I was internally quite concerned I had cancer. So now being on the other side and able to focus on 'yes this is my diagnosis and let's manage this and try to make the best of it!' I would like to help anyone feeling concerned.

Thanks for reading. Here's to a happy, healthy and gluten free 2020!

Edited January 24, 2020 by rt_116
Adding information

[Marmarl]

Thank you for sharing!

I will get my lab results today and endoscopy results next week. I ate gluten (loads of it) for 10 weeks, over the holidays, to be sure it's accurate. Interestingly my diarrhea went away and my main symptoms while eating gluten we're bloating, headache and fatigue. I also have a B12 deficiency and D deficiency and my gallbladder doesn't squeeze. I don't have heartburn or reflux that I notice, but the endoscopy showed a hiatal hernia and mild gastritis. 

I also have eyelid twitches, and this week my breast is incredibly sore, so interesting that you mentioned that as well. I have suffered from canker sores my whole life, never knew them to be called mouth ulcers.

[rt-116]

12 minutes ago, Marmarl said:

Thank you for sharing!

I will get my lab results today and endoscopy results next week. I ate gluten (loads of it) for 10 weeks, over the holidays, to be sure it's accurate. Interestingly my diarrhea went away and my main symptoms while eating gluten we're bloating, headache and fatigue. I also have a B12 deficiency and D deficiency and my gallbladder doesn't squeeze. I don't have heartburn or reflux that I notice, but the endoscopy showed a hiatal hernia and mild gastritis. 

I also have eyelid twitches, and this week my breast is incredibly sore, so interesting that you mentioned that as well. I have suffered from canker sores my whole life, never knew them to be called mouth ulcers.

Thank you for sharing back! Interesting to hear of others with the eyelid twitches. I'm not sure if I have a B12 or D deficiency yet but this is something I am going to try and find out as I reckon it's related to that. Good luck with your results - I hope things get sorted for you soon so you can begin feeling better all-round!

[Fenrir]

@rt_116

Yes, all of those symptoms could be related to Celiac Disease. celiac disease is systemic (means it affects every bodily system) due to the fact that it causes inflammation and causes poor absorption of nutrients. Nutrient deficiencies can cause neurological symptoms like tingling, itching..ect. That doesn't mean all of them are caused by celiac disease but they could be, no doubt. 

[rt-116]

7 minutes ago, Fenrir said:

@rt_116

Yes, all of those symptoms could be related to Celiac Disease. celiac disease is systemic (means it affects every bodily system) due to the fact that it causes inflammation and causes poor absorption of nutrients. Nutrient deficiencies can cause neurological symptoms like tingling, itching..ect. That doesn't mean all of them are caused by celiac disease but they could be, no doubt. 

Thank you very much for your post!  

[BuddhaBar]

About your anus... Both constipation and chronic diarrhea can cause sores. They might bleed, they might not bleed. Anal sores sting after bowel movements and can cause leaks. I've had those for years. Extremely hard to heal those. 

[Fenrir]

1 minute ago, BuddhaBar said:

About your anus... Both constipation and chronic diarrhea can cause sores. They might bleed, they might not bleed. Anal sores sting after bowel movements and can cause leaks. I've had those for years. Extremely hard to heal those. 

Yes, more than likely once the diarrhea clears up that will get better. Might still be a problem sometimes though.

[rt-116]

3 hours ago, BuddhaBar said:

About your anus... Both constipation and chronic diarrhea can cause sores. They might bleed, they might not bleed. Anal sores sting after bowel movements and can cause leaks. I've had those for years. Extremely hard to heal those. 

Thanks for replying. Could I ask what you do to relieve any of the pain or help the leaking? Sorry I know it's an embarrassing topic - hence my lack of info on this!!

[Fenrir]

7 minutes ago, rt_116 said:

Thanks for replying. Could I ask what you do to relieve any of the pain or help the leaking? Sorry I know it's an embarrassing topic - hence my lack of info on this!!

I would recommend using something to put a coating around the area to act as a barrier. Cortizone10 works, Gold Bond cream, hemorrhoid cream...ect. Put some on after you shower in the morning and when you go it will help prevent irritation, you may have to reapply afterward as well. Leaking takes time. 

[BuddhaBar]

36 minutes ago, rt_116 said:

Thanks for replying. Could I ask what you do to relieve any of the pain or help the leaking? Sorry I know it's an embarrassing topic - hence my lack of info on this!!

It comes and goes. I struggle with getting enough fiber in my diet so my stool is usually hard. Due to this I get anal sores. Im not leaking anymore, but I did in the past. I relax as much as I can when I pass stool and try to let the anus do its job by itself. It usually takes 10-15 minutes. That does the trick. I also use vaseline before I pass stool. 

[MisterSeth]

7 hours ago, BuddhaBar said:

It comes and goes. I struggle with getting enough fiber in my diet so my stool is usually hard. Due to this I get anal sores. Im not leaking anymore, but I did in the past. I relax as much as I can when I pass stool and try to let the anus do its job by itself. It usually takes 10-15 minutes. That does the trick. I also use vaseline before I pass stool. 

Buy some water based lube, like KY gel. Vaseline is not for internal use, it will take a long time to leave your anus and trap a tonne of fecal bacteria, that will make it much worse in the long run.

8 hours ago, rt_116 said:

Thanks for replying. Could I ask what you do to relieve any of the pain or help the leaking? Sorry I know it's an embarrassing topic - hence my lack of info on this!!

if you do leak try to clean the area immediately. most of my soreness was caused by walking around after "wet farts"

[DebJ14]

I see that you were newly diagnosed. Have you been tested for nutrient deficiencies?  I had chronic constipation for years resulting in assaults to my rear.  Once the nutrient deficiencies were identified and I was put on large doses of magnesium and antioxidants, including Vitamin C, the constipation went away.  Many of my Vitamin and mineral deficiencies were cleared up with targeted supplements, but I found that if I did not take at least 750 mg of magnesium in divided doses daily, that my migraines would return. 

After no real improvement in my Vitamin D, B12 and Antioxidant function after more than a year of massive doses, the doctor ordered epigenetic testing.  Turns out that the cause of those low levels was genetic.  When I started taking Vitamin C to address part of the antioxidant issue, it would take more than 30,000 mg of buffered ascorbate powder to induce diarrhea.  As I healed, that got better.  It now takes about 16,000mg of Vitamin C to induce diarrhea and I take a maintenance dose of 12,000 mg daily.  I had been down to as low as 6,000 mg until I had an episode where I was severely glutened and had projectile vomiting and explosive diarrhea.  So, back to square one.  I do a Vitamin C flush to calculate my bowel tolerance every other month and then take 75% of that amount.  If I get sick, or glutened, my need for C increases.  Eventually, as I heal it comes back down.  

As for the D and B12 I take 50,000 units of D3 weekly to keep my 25 OHd levels on the chart and I take methylated B12 in massive doses as well, but still test slightly B 12 anemic.  But, I can't take more because it makes me jittery and I can't sleep. 

It took me years to identify all my issues, including other food intolerances, once the gluten was removed and my immune system had time to go after all the other substances causing problems for me.  I am now in my 13th year of being gluten free and feel great, except I am still recovering from getting glutened in November 2019.  It was a really rough episode and this is the longest it has taken me in years to recover.  

[rt-116]

15 hours ago, DebJ14 said:

I see that you were newly diagnosed. Have you been tested for nutrient deficiencies?  I had chronic constipation for years resulting in assaults to my rear.  Once the nutrient deficiencies were identified and I was put on large doses of magnesium and antioxidants, including Vitamin C, the constipation went away.  Many of my Vitamin and mineral deficiencies were cleared up with targeted supplements, but I found that if I did not take at least 750 mg of magnesium in divided doses daily, that my migraines would return. 

After no real improvement in my Vitamin D, B12 and Antioxidant function after more than a year of massive doses, the doctor ordered epigenetic testing.  Turns out that the cause of those low levels was genetic.  When I started taking Vitamin C to address part of the antioxidant issue, it would take more than 30,000 mg of buffered ascorbate powder to induce diarrhea.  As I healed, that got better.  It now takes about 16,000mg of Vitamin C to induce diarrhea and I take a maintenance dose of 12,000 mg daily.  I had been down to as low as 6,000 mg until I had an episode where I was severely glutened and had projectile vomiting and explosive diarrhea.  So, back to square one.  I do a Vitamin C flush to calculate my bowel tolerance every other month and then take 75% of that amount.  If I get sick, or glutened, my need for C increases.  Eventually, as I heal it comes back down.  

As for the D and B12 I take 50,000 units of D3 weekly to keep my 25 OHd levels on the chart and I take methylated B12 in massive doses as well, but still test slightly B 12 anemic.  But, I can't take more because it makes me jittery and I can't sleep. 

It took me years to identify all my issues, including other food intolerances, once the gluten was removed and my immune system had time to go after all the other substances causing problems for me.  I am now in my 13th year of being gluten free and feel great, except I am still recovering from getting glutened in November 2019.  It was a really rough episode and this is the longest it has taken me in years to recover.  

Really helpful reading your experience. Thank you so much for taking the time to share. 

[Richard D]

Re: leaking...

One of the main side effects for me of Celiac was extremely painful feel-as-if-my-intestines-are-turning-inside-out bowel movements somewhere 2-4 hours after eating "too much" gluten.  (After going gluten-free, this has changed to "any gluten including cross-contamination").  A consequence to that, which I did not realize was happening at the time, is that I was slowly creating a huge, angry swollen hemorrhoid.  The hemorrhoid did not manifest as a single lump - which is more typical of hemorrhoids related to pregnancy or bathroom straining for example - but instead one of my entire hemorrhoid muscles became inflamed, and it would take maybe 2-4 hours for it to calm down and go back to normal.  Any time I went to the doctor, it would be normal!  They thought nothing was wrong! 

In the meantime, I was diagnosed with Celiac and went on a gluten-free diet.  Every time I got cross-contaminated (more common when first gluten-free), the horrible bowel movements would happen again.  Even without eating gluten, the problem became chronic; even eating normally, I'd have an inflamed hemorrhoid every BM that went away after a few hours. I started doing sitz baths on the recommendation of a gasto (he never saw anything wrong! but recommended if I was experiencing pain to try it, which did help).

Even with that approach and on a gluten-free diet, it gradually got worse and worse until one time I was scheduled for a colonoscopy anyway and mentioned to the gastro that it was still a problem and getting worse, so he offered to check it out again and do a hemorrhoid banding while he was doing the colonoscopy if it seemed like that would help.  By sheer coincidence, I had a last-minute painful bowel movement the morning of the procedure, so everything was aflame and super-angry when I went under anesthesia. When I woke up: "Good news! I now understand what you were talking about; we should have fixed this a long time ago. In any case, we did an unscheduled hemorrhoidectomy and now you'll need to stay home from work for 2-6 weeks for recovery!"

Here's the thing. What happened to me pre-surgery is EXACTLY what you are describing.  I would have a bowel movement, things would be a little uncomfortable, and I later came to understood that was internal inflammation.  As the swelling went down, new bits of BM would appear, previously trapped between folds of angry colon tissue.  Post-hemorrhoidectomy, this has never happened again.

I'm not sure that surgery is what you need here, but it does sound like it's hemorrhoid related.  What I'd suggest is trying a sitz bath in steaming-hot water before a bowel movement and see if it happens.  My experience was that if I reduced the inflammation before the BM started with a hot sitz bath, I would have less or no leaking at all.  If that's true for you too, you at least know that it is definitely hemorrhoid related.

[rt-116]

On 1/29/2020 at 12:40 AM, Richard D said:

Re: leaking...

One of the main side effects for me of Celiac was extremely painful feel-as-if-my-intestines-are-turning-inside-out bowel movements somewhere 2-4 hours after eating "too much" gluten.  (After going gluten-free, this has changed to "any gluten including cross-contamination").  A consequence to that, which I did not realize was happening at the time, is that I was slowly creating a huge, angry swollen hemorrhoid.  The hemorrhoid did not manifest as a single lump - which is more typical of hemorrhoids related to pregnancy or bathroom straining for example - but instead one of my entire hemorrhoid muscles became inflamed, and it would take maybe 2-4 hours for it to calm down and go back to normal.  Any time I went to the doctor, it would be normal!  They thought nothing was wrong! 

In the meantime, I was diagnosed with Celiac and went on a gluten-free diet.  Every time I got cross-contaminated (more common when first gluten-free), the horrible bowel movements would happen again.  Even without eating gluten, the problem became chronic; even eating normally, I'd have an inflamed hemorrhoid every BM that went away after a few hours. I started doing sitz baths on the recommendation of a gasto (he never saw anything wrong! but recommended if I was experiencing pain to try it, which did help).

Even with that approach and on a gluten-free diet, it gradually got worse and worse until one time I was scheduled for a colonoscopy anyway and mentioned to the gastro that it was still a problem and getting worse, so he offered to check it out again and do a hemorrhoid banding while he was doing the colonoscopy if it seemed like that would help.  By sheer coincidence, I had a last-minute painful bowel movement the morning of the procedure, so everything was aflame and super-angry when I went under anesthesia. When I woke up: "Good news! I now understand what you were talking about; we should have fixed this a long time ago. In any case, we did an unscheduled hemorrhoidectomy and now you'll need to stay home from work for 2-6 weeks for recovery!"

Here's the thing. What happened to me pre-surgery is EXACTLY what you are describing.  I would have a bowel movement, things would be a little uncomfortable, and I later came to understood that was internal inflammation.  As the swelling went down, new bits of BM would appear, previously trapped between folds of angry colon tissue.  Post-hemorrhoidectomy, this has never happened again.

I'm not sure that surgery is what you need here, but it does sound like it's hemorrhoid related.  What I'd suggest is trying a sitz bath in steaming-hot water before a bowel movement and see if it happens.  My experience was that if I reduced the inflammation before the BM started with a hot sitz bath, I would have less or no leaking at all.  If that's true for you too, you at least know that it is definitely hemorrhoid related.

Incredibly helpful thank you so much for sharing your experience. I am really keeping this in mind. 

[knitty kitty]

On 1/24/2020 at 1:40 PM, rt_116 said:

Thanks for replying. Could I ask what you do to relieve any of the pain or help the leaking? Sorry I know it's an embarrassing topic - hence my lack of info on this!!

Celiac Disease causes malabsorption which results in malnutrition.  Checking for nutritional deficiencies is part of follow up care for you.  

Vitamin D deficiency is a very common deficiency in newly diagnosed Celiacs.  Vitamin D is extremely important to intestinal health.  

My Vitamin D level was severely deficient before diagnosis.  I supplemented Vitamin D daily.  I ate them like m&m's actually.  As my Vitamin D level rose, this strange craving went away and I felt so much better and began to address my other vitamin deficiencies.

Here's some homework for you to read....

Chronic Constipation is linked to Vitamin D deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465937/

Fecal Incontinence (leaking) is linked to Vitamin D deficiency

https://pubmed.ncbi.nlm.nih.gov/24807423-vitamin-d-deficiency-is-associated-with-increased-fecal-incontinence-symptoms/

Vitamin D deficiency in PMS

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422848/#!po=20.6522

Hemorrhoids and Vitamin D

https://articles.mercola.com/sites/articles/archive/2009/06/16/how-do-you-know-if-you-have-hemorrhoids-or-something-serious.aspx

You might want to discuss with your doctor taking larger doses of Vitamin D to get your Vitamin D levels up faster...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4128480/

Magnesium instead of PPI's will help with muscle twitches

https://www.healthline.com/health/gerd/magnesium-acid-reflux

Don't forget the other vitamins and minerals

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820055/#!po=12.7451

Hope this helps!

 

 

 

[Rose G]

I’m afraid I’ve suffered from all of these symptoms for 4 years. I was diagnosed with acid reflux and anxiety and tested for thyroid disorders which came back negative. All of which did nothing. My parents have stopped taking me to doctors because they think I’m being over dramatic. The main things that bother me are a lump in my throat and tightness in my chest. I also have eye twitches, anaemia, sharp muscle cramps after eating, sore legs, fatigue, bloating, and the tingling. I can’t believe it. 4 years of absolute suffering and actually being convinced I’m insane (not to mention crying myself to sleep at night from discomfort) and here I am looking at a forum full of people with the same symptoms as me. I haven’t been diagnosed, and I’m not sure my parents will bring me to the doctor simply because of a Google search. I’m only 15.

[rt-116]

10 hours ago, knitty kitty said:

Celiac Disease causes malabsorption which results in malnutrition.  Checking for nutritional deficiencies is part of follow up care for you.  

Vitamin D deficiency is a very common deficiency in newly diagnosed Celiacs.  Vitamin D is extremely important to intestinal health.  

My Vitamin D level was severely deficient before diagnosis.  I supplemented Vitamin D daily.  I ate them like m&m's actually.  As my Vitamin D level rose, this strange craving went away and I felt so much better and began to address my other vitamin deficiencies.

Here's some homework for you to read....

Chronic Constipation is linked to Vitamin D deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465937/

Fecal Incontinence (leaking) is linked to Vitamin D deficiency

https://pubmed.ncbi.nlm.nih.gov/24807423-vitamin-d-deficiency-is-associated-with-increased-fecal-incontinence-symptoms/

Vitamin D deficiency in PMS

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422848/#!po=20.6522

Hemorrhoids and Vitamin D

https://articles.mercola.com/sites/articles/archive/2009/06/16/how-do-you-know-if-you-have-hemorrhoids-or-something-serious.aspx

You might want to discuss with your doctor taking larger doses of Vitamin D to get your Vitamin D levels up faster...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4128480/

Magnesium instead of PPI's will help with muscle twitches

https://www.healthline.com/health/gerd/magnesium-acid-reflux

Don't forget the other vitamins and minerals

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820055/#!po=12.7451

Hope this helps!

 

 

 

Thank you SO much for posting these links. Started reading them already and incredibly helpful. This forum is amazing for advice! Many thanks again.

[rt-116]

9 hours ago, Rose G said:

I’m afraid I’ve suffered from all of these symptoms for 4 years. I was diagnosed with acid reflux and anxiety and tested for thyroid disorders which came back negative. All of which did nothing. My parents have stopped taking me to doctors because they think I’m being over dramatic. The main things that bother me are a lump in my throat and tightness in my chest. I also have eye twitches, anaemia, sharp muscle cramps after eating, sore legs, fatigue, bloating, and the tingling. I can’t believe it. 4 years of absolute suffering and actually being convinced I’m insane (not to mention crying myself to sleep at night from discomfort) and here I am looking at a forum full of people with the same symptoms as me. I haven’t been diagnosed, and I’m not sure my parents will bring me to the doctor simply because of a Google search. I’m only 15.

I'm sorry you are struggling so much with all those horrible symptoms. And for so long too. I can relate, I thought I was going crazy - most of the symptoms I discussed with friends and family COULD have been attributed to anxiety, it's what they all told me, so I ended up trying to convince myself the same. During an appointment with a very very kind doctor, I voiced my concerns and it was actually her who suggested doing the blood test, almost to 'prove me otherwise' and that I was actually ok. Coeliac was never on her radar, nor mine. Turned into a surprise for all and I actually do have coeliac. So maybe try and get back to the doctors and try and get them to run the blood tests for you? I think in my situation it was the mentioning of stomach symptoms that led to the idea of testing for coeliac.

[cyclinglady]

@Rose G

Check your state laws about seeing a doctor without your parents.  I am linking this from California.  At 15, you have the right to see a doctor in California.  Yes, you can take your insurance card and your co-pay and see your doctor without your parents.  Even though they are financially responsible for you (pay your health insurance premiums, etc.), you can see a doctor in California.  Look up your state laws.  

http://publichealth.lacounty.gov/dhsp/You/Adolescent_Confidentiality_Toolkit.pdf

However, it might be best to try to work with your parents.  Calmly present your ideas.  Print off supporting data.  If they do not choose to support you, consider a school counselor or social services.  

Know that just looking at symptoms alone, it is impossible to diagnose celiac disease because those symptoms overlap with so many other illnesses.  But something is obviously wrong with you.  So do not give up. 

Your parents may be just as frustrated as you.  They have taken you to several doctors.  They sound like mine.  No one could figure out my stomach aches and passing out for 30 years.  I know my parents and doctors tried.  My parents love me just as your parents do (pretty sure they do or you would not have been taken to the doctor).  

You also have a right to your medical records and you should maintain them by keeping copies and a file (physical and computer).   

How do you know you are anemic?  Do you have the support lab tests to support it?  Just being tired does not make you anemic.  So, increase your knowledge.  

Little things like this will show your parents that you are trying to take steps to becoming an adult and managing your health.   

 

 

Edited February 6, 2020 by cyclinglady

[Rose G]

7 hours ago, cyclinglady said:

@Rose G

Check your state laws about seeing a doctor without your parents.  I am linking this from California.  At 15, you have the right to see a doctor in California.  Yes, you can take your insurance card and your co-pay and see your doctor without your parents.  Even though they are financially responsible for you (pay your health insurance premiums, etc.), you can see a doctor in California.  Look up your state laws.  

http://publichealth.lacounty.gov/dhsp/You/Adolescent_Confidentiality_Toolkit.pdf

However, it might be best to try to work with your parents.  Calmly present your ideas.  Print off supporting data.  If they do not choose to support you, consider a school counselor or social services.  

Know that just looking at symptoms alone, it is impossible to diagnose celiac disease because those symptoms overlap with so many other illnesses.  But something is obviously wrong with you.  So do not give up. 

Your parents may be just as frustrated as you.  They have taken you to several doctors.  They sound like mine.  No one could figure out my stomach aches and passing out for 30 years.  I know my parents and doctors tried.  My parents love me just as your parents do (pretty sure they do or you would not have been taken to the doctor).  

You also have a right to your medical records and you should maintain them by keeping copies and a file (physical and computer).   

How do you know you are anemic?  Do you have the support lab tests to support it?  Just being tired does not make you anemic.  So, increase your knowledge.  

Little things like this will show your parents that you are trying to take steps to becoming an adult and managing your health.   

 

 

Hello, thanks for the response. I’ve been diagnosed with anemia more than once by my doctors. They just didn’t understand why I was so malnourished because I ate a decent amount. I’ve convinced my parents to bring me to a doctor once more.

[cyclinglady]

4 hours ago, Rose G said:

Hello, thanks for the response. I’ve been diagnosed with anemia more than once by my doctors. They just didn’t understand why I was so malnourished because I ate a decent amount. I’ve convinced my parents to bring me to a doctor once more.

That is good news.  Keep us posted about your progress. ?

[Javi]

Hello everyone,

thanks for sharing your experiences. Well I´ve been having some issues for about 6 months now, headaches, dizziness, muscle spams and myalgias (back, trapezius, neck) and lately in my face, something related to a TMJ disorder combined with an awful pain in the masseter and temporalis muscles, which also produces a horrible pulsatile tinnitus (when you can hear like your own heartbeat in your ear) which comes and goes. A doc thinks I could be suffering from a neuritis in a nerve in my inner ear or even in the trigeminal nerve, but for that I will see a neurologist pretty soon. I have been testing different diets and recently I had a complete blood screen (ANA, CCP-Ak, CK, CRP, FT3, FT4, Glutaminase, Gliadin, Immunoglobulin IgA, Rheumafactor RF, THS and MAK) and also for B12 and D3, let´s see when the lab results come. I have done sports all my life, mountainbiking, trekking running, swimming, you name it, but since last year around summer something just clicked in my body and I started to feel all these new symptoms and pain, and it happened after a severe cold, and it all began with dizziness and headaches. During that time I also started eating hummus like crazy, I fell in love with it, had it almost every other day, I´ve read that chickpeas are rich in lectin, which is bad? I´ve been to a couple of doctors, had a bunch of MRIs and all looks good, which is great, but at the same time once feels a bit lost, since everyone says you are OK but you still have the pain. After the blood test I am staying away from gluten as much as I can, I even found a gluten-free beer which is great, I miss a good pizza though. Any thoughts on this, has anyone had something similar?

Regarding the leaky anus and constipation, when I was in my teen years I was diagnosed with irritable bowel syndrome, it was very uncomfortable, constipation, hard stool, bloating, etc. I took back then a drug called Trimebutine, it was good, 3 times a day before meals, but it made me dizzy and I also had headaches, but it improved my digestion and this gel-like fluid coming from the butt was gone. I took this for about 3-4 years and then my digestion went back to normal. A couple of months ago I had some issues with my digestion again, so I started drinking Kefir in the morning, it was helping, but suddenly the dizziness and the headaches became worse, so I had to stop.

Like most of us here, I have spent hours surfing the web for information and have learnt tons of new things, from the gut bacteria to the brain, supplements, celiac disease, pain, myalgia, neuralgia, immunodeficiency, inflammation, etc, etc. I am staying positive and and look forward to a pain-free life soon.

Btw, has anyone tried lion´s mane (Hericium)? I have been taking it recently and I am feeling a bit better, it is difficult to know if it is just that, since I have restarted my biking, also eating almost gluten-free, and I am also taking daily1000 units of vitamin D, B complex supplement, 240 mg of vitamin C, and lately I have been eating plenty of red meat and rice, that is like 80% of my diet now. 

Take care!

 

 

[cyclinglady]

6 hours ago, Javi said:

Hello everyone,

thanks for sharing your experiences. Well I´ve been having some issues for about 6 months now, headaches, dizziness, muscle spams and myalgias (back, trapezius, neck) and lately in my face, something related to a TMJ disorder combined with an awful pain in the masseter and temporalis muscles, which also produces a horrible pulsatile tinnitus (when you can hear like your own heartbeat in your ear) which comes and goes. A doc thinks I could be suffering from a neuritis in a nerve in my inner ear or even in the trigeminal nerve, but for that I will see a neurologist pretty soon. I have been testing different diets and recently I had a complete blood screen (ANA, CCP-Ak, CK, CRP, FT3, FT4, Glutaminase, Gliadin, Immunoglobulin IgA, Rheumafactor RF, THS and MAK) and also for B12 and D3, let´s see when the lab results come. I have done sports all my life, mountainbiking, trekking running, swimming, you name it, but since last year around summer something just clicked in my body and I started to feel all these new symptoms and pain, and it happened after a severe cold, and it all began with dizziness and headaches. During that time I also started eating hummus like crazy, I fell in love with it, had it almost every other day, I´ve read that chickpeas are rich in lectin, which is bad? I´ve been to a couple of doctors, had a bunch of MRIs and all looks good, which is great, but at the same time once feels a bit lost, since everyone says you are OK but you still have the pain. After the blood test I am staying away from gluten as much as I can, I even found a gluten-free beer which is great, I miss a good pizza though. Any thoughts on this, has anyone had something similar?

Regarding the leaky anus and constipation, when I was in my teen years I was diagnosed with irritable bowel syndrome, it was very uncomfortable, constipation, hard stool, bloating, etc. I took back then a drug called Trimebutine, it was good, 3 times a day before meals, but it made me dizzy and I also had headaches, but it improved my digestion and this gel-like fluid coming from the butt was gone. I took this for about 3-4 years and then my digestion went back to normal. A couple of months ago I had some issues with my digestion again, so I started drinking Kefir in the morning, it was helping, but suddenly the dizziness and the headaches became worse, so I had to stop.

Like most of us here, I have spent hours surfing the web for information and have learnt tons of new things, from the gut bacteria to the brain, supplements, celiac disease, pain, myalgia, neuralgia, immunodeficiency, inflammation, etc, etc. I am staying positive and and look forward to a pain-free life soon.

Btw, has anyone tried lion´s mane (Hericium)? I have been taking it recently and I am feeling a bit better, it is difficult to know if it is just that, since I have restarted my biking, also eating almost gluten-free, and I am also taking daily1000 units of vitamin D, B complex supplement, 240 mg of vitamin C, and lately I have been eating plenty of red meat and rice, that is like 80% of my diet now. 

Take care!

 

 

Welcome! 

Not sure if your timeline, but I hope you had been consuming gluten prior to your testing for celiac disease.  All testing, even biopsies require you to be on a full daily gluten diet.  For blood tests it is 8 to 12 weeks.