Thinking I May Have Been Celiac All My Life

[CharlesBronson]

Hello All

I'm almost one year into my recovery from celiac disease. I've been gluten free for 9-10 months and totally grain free for 2 months (I'm doing better w/o grains). I know that I still have a lot of healing ahead of me but...

As I research celiac more and more, I've come to recognize symptoms of childhood celiacs in myself and also long-term, unchecked celiac. As a child, I had horrific anxiety and twitches. Then, later, I lost much of the enamel on my teeth, which appears to be a symptom of unchecked celiac. 

So, my question is, if I've had celiac for 36 years... Am I looking at a long, long time to heal? Like more than two years? I've already lost so many years to illness, I just can't bear losing more.

Thank you so much. 

 

[cyclinglady]

So many of us are in the same boat.  Once diagnosed, we realize that symptoms occurred decades before.  Those symptoms can change too.  Celiac disease is like a chameleon.

If you continue the treatment by following a gluten free diet, you should heal.  Healing is different for many because systemic issues are different.  Most heal within two years.  Some have permanent damage like your teeth enamel or my issue of osteoporosis.  

I felt pretty good at a year into the diet.  Then I was diagnosed with diabetes.  I went grain free (I do fall off the gluten-free grain wagon occasionally) and I felt even better.  Five years later, a repeat endoscopy/biopsies revealed a healthy small intestine.   You can heal!  

[Ennis-TX]

Like you looking back I had tale tale symptoms most of my life. But my gut was proved to be totally healed after a few years (confirmed via scope). Other complications such as my developed food sensitivities have come and gone over the years. And I have gained much of my feelings back from the ataxia nerve damage the past 5-6 years. Still have some issues and other AI concerns but the celiac is well under control and healed.

I am pretty much Paleo (grain and dairy free) and eat hardly any carbs almost a keto diet (to high protein really)

Edited November 6, 2019 by Ennis_TX

[vvicin02]

It has been a little over a year for me. I am finally getting comfortable with the diet and feel pretty good. I am not grain free though (I make bread and pasta from ancient grains like buckwheat, sorghum and brown rice and others). My numbers and biopsies are still not normal but it has improved considerably. My Iron and Ferritin levels are now normal - cheers! I suspect like some have said that two years is what it will take. I am a 62 male and I probably have a lot to heal. I would say be patient and you will get there in no time. Hope you feel good.

[Awol cast iron stomach]

As others said above we now realize most of us went undiagnosed or misdiagnosed longer than ideal. personally, it did take more than 2 years to heal after my gluten challenge.

I still currently struggle with the damage to my nerves I believe occured due to being misdiagnosed  for so long. I have some challenging postpradinal hypotension that is wicked frustrating after meals especially at work. I work hard to make sure I eat enough protein, get enough electrolytes, and stay insanely hydrated. I am trying to work on getting a snack in there between late morning and late afternoon. I didn't realize the extent of it until returning back to ft active position.

I do have a genetic predisposition to low  /" good" blood pressure. Which most people remind me I should be grateful for. I try to be, but the dysfunctional autonomic nerve issues after eating can be overwhelming. As I do believe most of it was due to my gluten intolerant neuropathy issues.

It is also frustrating as my GI issues had been misdiagnosed since the late 90's and when I was having what I know now is postpradinal hypotension and ans dysfunction  issues occured in 2008 and were also misdiagnosed back then. 2016 is when a team put the pieces together about gluten.

I try to be grateful where I am now, but I do occasionally wonder if I would have less problems had these delays not occured.

Things will improve, in time you will accept the additional tag alongs, you are in good company here.

Best wishes on your healing journey.

 

[CharlesBronson]

1 hour ago, Awol cast iron stomach said:

As others said above we now realize most of us went undiagnosed or misdiagnosed longer than ideal. personally, it did take more than 2 years to heal after my gluten challenge.

I still currently struggle with the damage to my nerves I believe occured due to being misdiagnosed  for so long. I have some challenging postpradinal hypotension that is wicked frustrating after meals especially at work. I work hard to make sure I eat enough protein, get enough electrolytes, and stay insanely hydrated. I am trying to work on getting a snack in there between late morning and late afternoon. I didn't realize the extent of it until returning back to ft active position.

I do have a genetic predisposition to low  /" good" blood pressure. Which most people remind me I should be grateful for. I try to be, but the dysfunctional autonomic nerve issues after eating can be overwhelming. As I do believe most of it was due to my gluten intolerant neuropathy issues.

It is also frustrating as my GI issues had been misdiagnosed since the late 90's and when I was having what I know now is postpradinal hypotension and ans dysfunction  issues occured in 2008 and were also misdiagnosed back then. 2016 is when a team put the pieces together about gluten.

I try to be grateful where I am now, but I do occasionally wonder if I would have less problems had these delays not occured.

Things will improve, in time you will accept the additional tag alongs, you are in good company here.

Best wishes on your healing journey.

 

I really loved your honesty here Awol. I can relate to much of what you said. I'm still pretty disabled at the moment, but I'm staying hopeful for a 'normal' future. 

And thank you so much to others who've written their support here too. I'm staying positive despite the long, long recovery. 

AWOL.... Do you mind me asking what you take/how you eat to maintain protein, electrolytes and hydration? I know I do not get enough of all three, but it can be such a painful task to eat/drink sometimes. 

I do notice that I feel better with lots more Himalayan sea salt in my diet. But I've always heard salt was bad, so I try not to use much. I eat lots of chicken, but beef and fatty fish can make me feel worse at times. As for water, I try not to drink so much as I'll be urinating all night long. It's all so exhausting.

 

Thank you all  

[Beverage]

It does take time to be completely healed, but you will get more and more healing as you continue on your path.  I was diagnosed in the summer of 2015 at age 58.  At that point, my kidneys were failing, I could hardly walk around the house, and I felt I was slowly dying (after decades of going to doctors, a natuopath diagnosed me in 15 minutes, thank God, he saved my life).  In hindsight, I probably had it since I was a teenager or early 20's (no intestinal symptoms at all, but lots of other stuff). 

I am now 63 and feel a lot better, still some lingering issues, mostly with asthma (but we've figured out vitamin D3 and K knocked that down significantly and only gets triggered when I exercise now).  I am now walking 2 1/2 miles a day and want to get up to 3...just increasing it a little each week so that I don't get too worn out.  I don't get the flu every month like I used to, hardly ever feel sick.  Allergies are significantly reduced, more than allergy shots ever did for me.  I'm stronger, stand taller, and look better than 90% of people my age, so it's all good.  My skin is glowing, sagging and wrinkles reduced (I went to the pharmacy to pick up a prescription for the asthma, and the pharmacist looked at my records on the screen and looked at me back and forth 3 times, and said...this prescription isn't for you, is it...is it for your mother??? tee hee)  And my kidneys have recovered from 40% functioning to 80%.  AMAZING!

My advice is to work with a good naturopath that has experience with other Celiac patients and get regular blood tests for vitamin deficiencies.  Keep working on them one by one.   Be your best advocate, learn about what forms of vitamins work best, that actually get absorbed, what works together, what doesn't work together.  Spend the money on good supplements that are gluten free of course, but that are the better forms, it really does make a difference.  Grocery store vitamins just don't cut it.

Also I have learned A LOT from the Dr. Osborne videos on youtube.  Sign up here:  https://www.youtube.com/channel/UCoiSo5WDJmRxOf2cqgC7DSg

Good luck, don't give up, keep learning and keep trying.

 

[Keight]

On 11/7/2019 at 7:25 AM, Ennis_TX said:

Like you looking back I had tale tale symptoms most of my life. But my gut was proved to be totally healed after a few years (confirmed via scope). Other complications such as my developed food sensitivities have come and gone over the years. And I have gained much of my feelings back from the ataxia nerve damage the past 5-6 years. Still have some issues and other AI concerns but the celiac is well under control and healed.

I am pretty much Paleo (grain and dairy free) and eat hardly any carbs almost a keto diet (to high protein really)

The more research I do into the LCHF type lifestyle, the more I am aghast at the Standard Western Diet. I am feeling significantly better on the same plan as you. Oh, how much damage prevention could take place if others knew of clean, heathful eating...!

[katmar]

On 11/8/2019 at 12:54 PM, Awol cast iron stomach said:

As others said above we now realize most of us went undiagnosed or misdiagnosed longer than ideal. personally, it did take more than 2 years to heal after my gluten challenge.

I still currently struggle with the damage to my nerves I believe occured due to being misdiagnosed  for so long. I have some challenging postpradinal hypotension that is wicked frustrating after meals especially at work. I work hard to make sure I eat enough protein, get enough electrolytes, and stay insanely hydrated. I am trying to work on getting a snack in there between late morning and late afternoon. I didn't realize the extent of it until returning back to ft active position.

I do have a genetic predisposition to low  /" good" blood pressure. Which most people remind me I should be grateful for. I try to be, but the dysfunctional autonomic nerve issues after eating can be overwhelming. As I do believe most of it was due to my gluten intolerant neuropathy issues.

It is also frustrating as my GI issues had been misdiagnosed since the late 90's and when I was having what I know now is postpradinal hypotension and ans dysfunction  issues occured in 2008 and were also misdiagnosed back then. 2016 is when a team put the pieces together about gluten.

I try to be grateful where I am now, but I do occasionally wonder if I would have less problems had these delays not occured.

Things will improve, in time you will accept the additional tag alongs, you are in good company here.

Best wishes on your healing journey.

 

Hey can i ask you about the postpradinal hypotension? I have had some of these issues just lately.. I noticed it was mostly after eating my blood pressure drops. I try to eat smaller meals and hydrate.. is there anything else I should be aware of? Does the dizziness only happen upon standing up? that's what I've read but I definitely have dizziness/lightheadedness more often than usual.. just lately.. 

[Awol cast iron stomach]

On 11/25/2019 at 9:55 PM, katmar said:

Hey can i ask you about the postpradinal hypotension? I have had some of these issues just lately.. I noticed it was mostly after eating my blood pressure drops. I try to eat smaller meals and hydrate.. is there anything else I should be aware of? Does the dizziness only happen upon standing up? that's what I've read but I definitely have dizziness/lightheadedness more often than usual.. just lately.. 

My apologizes on my delay getting back to you. I erroneously did not flag the thread for follow up.

my symptom is typically light headeness with some brain fog and coat hanger and back of head pain. I would not say I get dizzy I did get that in my early 20's so I know the difference, but dizzy is not currently the adjective I would use.

I get lightheaded and it is worse with standing or walking particularly after eating. I need to sit after eating or walk and get up like a sloth after eating. I prefer to work out with a relatively empty stomach. I went to the gym too early once after eating and had to stop working out due to symtoms. I really try to stay seated at work for 90 minutes or so after eating if I can.

I have been monitoring my bp and heart rate this week at home ( I am off work this week) I now realize my data is showing I have POTS like bp and hr going on not "true" postprandial hypotension.  It makes sense as I am in my 40s and postprandial is usually in seniors. Sorry I am self lab rat, I spoke before my home self lab rat data collection was performed. 

without eating my bp is low, I stand up it raises, then at intervals 1, 2, 5, 10 minutes fluctuates- raises,  raises more, (still considered good blood pressure) settles down to more normal. My heart rate data on average is showing I go up 20-21 with standing , my bp raises systolic 16, diastolic 20 with the 2 and 5 minute interval being peak, it settles down to more normal rates at the 10minute mark, but higher than my resting rate/pressure before before standing. A lot of info I know, but you asked and I am a science data collector by nature. So there you have it.

It's likely POTS and eating is  currently one of my triggers, my blood further leaves my upper body flooding my abdominal region further starving my brain of blood as it floods and bloats my abdominal area and my legs/feet. I get coat hanger pain and my neck/ cerebellum aches feels off. If I don't have my compression socks on to limit the "dramatic show"  my flushing skin and bloating abdominal region frightens others (or over the years I discovered  ) causes them to arm chair misdiagnose me with all kinds of things. They are never flattering, always wrong, and hurtful because some people actually verbalize their thoughts. Thankfully to my current workplace and the people in my life they realize I have issues and they act professionally even if they don't understand.

This week I researched a neurologist geographically near my area that is knowledgeable of dysautonomia and POTS. His waitlist is over a year. At least I know who and what hospital he is out of in case of emergency.

As for now what I find helpful is to wear compression socks at work. It does not stop the lightheadness entirely , but it helps. Balancing  Activity level can make things better symptomatically, but as one can imagine is hard to do. I drink 64 ounces of water or water with lemon in it at work. I bring nuts or other snack so I can cut my lunch portion down. It's hard to eat at work other than lunch due to scheduling. I still get hungry, but have to put employment and decreased lightheadedness symptom above bigger portion of food for now. I have both Himalayan salt and sea salt on my table.  The electrolytes the body needs are sodium, cholride, potassium, calcium, magnesium. Look for them in whole foods, supplements, minerals etc when you can.

I have read mixed reviews of dysautonomia forums about Nuun, Gatorade, Pedialyte etc. Some swear by it, others say you build up tolerance, or they exacerbate symptoms for others.  After reading  those forums, I think POTS people have similarities , but not all have same triggers. For some time now I have had to suss out which symptoms are POTS and which are celiac . They have similarities and differences I can be active for both if I were to eat gluten. Which I don't do. I have had them both for a long time suspect.

sometimes in the past 3 years when I thought it was gluten cc it was my POTS. The DH rash usually indicates gluten cc.

so lastly what are my numbers like ( I won't give you all the data) 

I can be low 99/63  some days. One day I was 106/66 I stood then shot up to132/82 at 2 minutes,  then 131/79  at 5 min interval just for standing it settles to 108/84 at 10 minute mark. Feels cr@ppy?.

I consider my normal to be 110/80 these days, when not symptomatic and my healthier gluten-free days when I was in better athletic condition, before my gluten challenge, I use to be a consistent  117/80 or 120/80 not symptomatic dramatic jumps. The good days. I miss them and so want them back.

I started my children's school year relatively well, mild symptoms, but had some bad acupuncture and a virus , then a work malfunctioning/inconsistent HVAC system that has kept me symptomatic longer than I wished for. After my gluten challenge I realize both conditions got triggered and I lost my athletic conditioning my body needs. 

It is a long road ahead with the tricks I listed above to cope , accepting my symptoms and trying to look/act normal when symptomatic, as I slowly hope to recondition and find stability again. 

 

Good luck to you as well

 

 

 

 

Edited November 29, 2019 by Awol cast iron stomach
Added and fixed errors