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SophieSweetPotato

Doctors can’t figured it out

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Prepare yourselves this may be a long one

I’ve been in and out of hospitals for the past 6 months when I got pneumonia in January my health went down hill I am 22 years old I was diagnosed with celiac in 2014 with an endoscopy. Anyway what’s been happening is thyroid problems, throwing up so much I was in the hospital for 2 weeks being feed through a tube in my arm because I couldn’t swallow. Constant shortness of breath, even though I’ve had every test done ct, mri, they scanned my lungs listened to them I even had a lung specialist look at them and everything looks fine. I’m extreme low on potassium and I had another blood test recently about a few days ago and they say it shows that I’m not absorbing any nutrition even though I’m eating. Now they want to do a stool test which I don’t even know if I can’t get because my Gi doctors office is closed. I’m so scared, 2 of my family members died from colon cancer maybe that’s what this is. My feet swell everyday all the way up to my knees I’m constantly struggling to swallow simple things. I may end up in the hospital again if my GI can’t test me this could be internal bleeding I don’t know.

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Thyroid issues are a common related issue with celiac disease, it sounds like you’ve been tested for this issue, is that correct? If so, did they find hypo or hyper thyroid, and treat you for this? Are you 100% gluten-free? Hospitals are famous for not being great at providing gluten-free meals.

Also, have you been tested for vitamin and mineral deficiencies like D, B12, Iron, K, etc., as they are common in celiacs? Are you taking supplements?


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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So, to be clear, are you gluten-free?  It takes time to recover from celiac disease damage.  A year or more is not too long to expect.  In the meantime healing goes faster if you stick with a whole foods diet of simple foods.  Avoid processed foods and do your own cooking.  Any packaged food you buy should have 3 ingredients or less.  The key to improved health for celiacs is to avoid all gluten ingestion.  Even trace amounts can cause an immune reaction to flare.

You may also have another condition going on.  Eisonophilic esophagitis is rare but can cause swelling problems.  I have swallowing issues probably caused by lack of  B vitamins for too long.   You might want to find some liquid B vitamins to take.  Your doctors should be able to advise you on vitamin / mineral needs.

Edited by GFinDC

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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5 hours ago, Scott Adams said:

Thyroid issues are a common related issue with celiac disease, it sounds like you’ve been tested for this issue, is that correct? If so, did they find hypo or hyper thyroid, and treat you for this? Are you 100% gluten-free? Hospitals are famous for not being great at providing gluten-free meals.

Also, have you been tested for vitamin and mineral deficiencies like D, B12, Iron, K, etc., as they are common in celiacs? Are you taking supplements?

Yes my thyroid is fine it was some sort of inflammation a few months ago sorry I forgot what it was called in medical terms. I am 100% gluten free have been since 2014 and my endoscopy I had 2 months ago came back great, I am defiance in vitamin D they said my b12 were fine. I’m not taking any supplements but I do drink ensure 

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Sophie.  Something is not right.  How can you not be absorbing your food and yet be healed from celiac disease based on your last endoscopy?

You might have something else.  You can develop more than one autoimmune disorder.   Get back to your GI or PCP for answers.  

Sorry, but it sounds like you are doing a great job remaining gluten free.  We can not diagnose you here — just help you remain gluten free.  😊

 

 

Edited by cyclinglady

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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On 6/3/2020 at 11:43 AM, SophieSweetPotato said:

Prepare yourselves this may be a long one

I’ve been in and out of hospitals for the past 6 months when I got pneumonia in January my health went down hill I am 22 years old I was diagnosed with celiac in 2014 with an endoscopy. Anyway what’s been happening is thyroid problems, throwing up so much I was in the hospital for 2 weeks being feed through a tube in my arm because I couldn’t swallow. Constant shortness of breath, even though I’ve had every test done ct, mri, they scanned my lungs listened to them I even had a lung specialist look at them and everything looks fine. I’m extreme low on potassium and I had another blood test recently about a few days ago and they say it shows that I’m not absorbing any nutrition even though I’m eating. Now they want to do a stool test which I don’t even know if I can’t get because my Gi doctors office is closed. I’m so scared, 2 of my family members died from colon cancer maybe that’s what this is. My feet swell everyday all the way up to my knees I’m constantly struggling to swallow simple things. I may end up in the hospital again if my GI can’t test me this could be internal bleeding I don’t know.

SophieSweetPotato,

You might be experiencing something called Refeeding Syndrome...

https://www.medicalnewstoday.com/articles/322120#recovery

They note quoting

"Replacing vitamins, such as thiamine, can also help to treat certain symptoms. A person will need continued vitamin and electrolyte replacement until levels stabilize."

Your Thiamine deficiency can lead to your low Potassium levels...

See this recent hormones matter article that explains why this is....

https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

Be sure to find a high quality B-1 like Benfotiamine....so you will be sure body is absorbing it in sufficient quantities to make a difference...

see this online youtube video about  how to find a high quality B-1 supplement like Benfotiamine...

Benfotiamine is widely available in most diabetic sections of pharmacies or good nutrition/Vitamin stores...

It is best taken with Magnesium Glycinate with meals.....

I also recommend adding to that a good B-complex like an Enzymic B-50 or B-100....again with meals...

Most people notice a significant improvement in a month and  sustained difference in their health in 3 months....if this is contributing to your issues....

Celiac's are at higher risks for Refeeding syndrome and hospitalizations is a common trigger and it estimated to be missed by 50 percent of doctors' in at Risk Patient's.....

Because severe Malnutrition can be triggered by your Celiac disease Refeeding Syndrome is happening in Celiac's and going undiagnosed in at least 50 percent of Celiac's..,,,

Your fluid retention in your leg's can be a sign of Wet Beri Beri....a potential sign of possible heart failure missed by the doctor's...

Here is another article that might help you...and why Benfotiamine with an Enzymic B-Vitamin and Magnesium Glycinate would be best....

https://www.livestrong.com/article/503879-vitamin-deficiencies-racing-heart/

I can only tell you it helped me...

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

Posterboy,

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