First Dr. Visit on the 8th

[HiddlePixie]

Hello everyone,

I am 33 years old, biracial (Black & white), cisgender and AFAB. My Celiac journey is a circuitous one. As a kid of maybe 12, I started to notice that my stomach hurt and cramped, and I often felt super nauseous after eating food. I saw one doctor around that time who briefly considered and dismissed the idea of a milk allergy. She told me that if I had a problem with milk, it would’ve been present at birth, and since mine was not, I couldn’t possibly have a real issue. Her advice was to “watch what you eat” and “avoid anything that seems to make it hurt.”

I tried this method, with no relief, well into my 20s, including a nearly 5 yr stint of vegetarianism.

In early 2020 or 2021 (what is time post-Covid), I took an Everlywell home test and received results that suggested major sensitivities to gluten, wheat, barley, rye, anything made with cow’s milk, and more. At the time, I was in an MA program, and managing my diet felt impossible. In May 2020, I finished my MA, and immediately applied to PhDs. Now, I’m 2+ years into my PhD program, and no better at managing my diet. My symptoms, however, are running my life.

I have: chronic diarrhea after eating, often pale and/or fatty stools; nausea; occasional vomiting; migraines; extreme and constant fatigue; bloating; gas; lack of appetite; night sweats; severe vitamin D deficiency; low iron levels; low thyroid levels; inconsistent glucose levels; pain and burning in my joints; inability to find words or phrases (brain fog?), ADHD; depression; generalized anxiety disorder; C-PTSD, and more…

I’ve been down the Google rabbit hole and all signs, for me, point to Celiac. A few years ago, a doctor recommended an endoscopy for me based on some of these symptoms, but I didn’t have the $$$ or insurance to follow up at that time. Now that I have an appointment for evaluation on the books (next Wed), I find myself terrified that this doctor, who has never met me, is gonna think I’m some self-diagnosing WebMD nut and not take my symptoms seriously as a whole picture.

Has anyone experienced that? And how did/do you advocate for yourselves (or your children)?

[Scott Adams]

Welcome to the forum!

The first step to diagnose celiac disease would be a blood test, and if you can't afford one done via a doctor there are home test kits available for ~$90:

https://www.imaware.health/

For the blood test you'd need to be eating gluten daily for 6-8 weeks beforehand, and at least 2 week prior to an endoscopy:

 

Last, the results would not rule out non-celiac gluten sensitivity, for which there currently isn't a test, yet it is ~10x more common than celiac disease. If you end up with negative results, consider going gluten-free for a few months to see it your symptoms improve, and if so, you likely would have NCGS.

[trents]

Your symptoms scream celiac disease. Make sure you present your catalog of symptoms to the doctor at the appointment and say, "I strongly suspect I have celiac disease. Would you be willing to order celiac antibody blood testing?" Since you have several classic GI symptoms for celiac disease I think the doctor would be willing to comply.

Edited March 4, 2023 by trents

[patty-maguire]

Your symptoms certainly scream celiac.  You have a few options.

1. Go to the doctor and tell him / her all about your symptoms and ask to be tested for celiac.  Doctors these days expect people to google their symptoms so you may not meet the resistance you think.  There is more awareness these days of celiac as well.

2.  There is an at home test by Imaware.  It doesn't diagnose celiac but it's meant to give you something to take to your dr to ask for further testing.

3.  You can do genetic testing like 23andMe.  They test for the celiac genes.  It's more to rule out celiac.  If you don't have the genes then you likely don't have celiac.  Something like 40% of the population (don't quote me I haven't looked it up in a while) have the gene but only about 1% have celiac so you still need to get tested.  

It's very important that you do not go gluten free until you've been tested.  You must be consuming gluten for the test to be accurate.

Here is some info on celiac and lactose intolerance.  Spoiler alert - it's a symptom.  https://www.naturallygluten-free.com/celiac-and-lactose-intolerance.html

All the best.

[Wheatwacked]

15 hours ago, HiddlePixie said:

severe vitamin D deficiency

Fix this first. 70-90 ng/ml is where you get maximum benefit. Doctors are taught that >29 ng/ml is sufficient.  Not enough eggs and meat (choline) will cause fatty digestion issues like liver and gall bladder, and high homocysteine. The standard american diet has a 20:1 omega 6:3 ratio. Healthy is closer to1:1. White wheat flour is 22:1; 100% Grass Fed milk is 1:1 and it tastes so much better and doesn't hurt my stomch.

Ask the doctor about a vitamin B IV.

Keep eating gluten until you and the doctor a done testing.

 

" It is recommended that targeting a 25(OH)D level of 40–70 ng/mL for each individual would provide optimal health benefits and reduce health care costs. Current recommended doses of vitamin D supplementation fall short of what is needed to obtain ideal serum levels.  Vitamin D (40-70 ng) in Children’s Health – review Sept 2014"

Quote

Conclusions and relevance: This meta-analysis and systematic review found that high-dose vitamin D supplementation was not associated with an increased risk of SAEs in children aged 0 to 6 years, and that clinical adverse events potentially related to the supplementation were rare. These findings suggest that vitamin D supplementation in the dose ranges of 1200 to 10 000 IU/d and bolus doses to 600 000 IU to young children may be well tolerated.  https://vitamindwiki.com/High-dose+Vitamin+D+safe+for+children+(10%2C000+IU+daily%2C+600%2C000+IU+bolus)+–+meta-analysis+April+2022 

 

[T burd]

On 3/4/2023 at 4:17 AM, HiddlePixie said:

Hello everyone,

I am 33 years old, biracial (Black & white), cisgender and AFAB. My Celiac journey is a circuitous one. As a kid of maybe 12, I started to notice that my stomach hurt and cramped, and I often felt super nauseous after eating food. I saw one doctor around that time who briefly considered and dismissed the idea of a milk allergy. She told me that if I had a problem with milk, it would’ve been present at birth, and since mine was not, I couldn’t possibly have a real issue. Her advice was to “watch what you eat” and “avoid anything that seems to make it hurt.”

I tried this method, with no relief, well into my 20s, including a nearly 5 yr stint of vegetarianism.

In early 2020 or 2021 (what is time post-Covid), I took an Everlywell home test and received results that suggested major sensitivities to gluten, wheat, barley, rye, anything made with cow’s milk, and more. At the time, I was in an MA program, and managing my diet felt impossible. In May 2020, I finished my MA, and immediately applied to PhDs. Now, I’m 2+ years into my PhD program, and no better at managing my diet. My symptoms, however, are running my life.

I have: chronic diarrhea after eating, often pale and/or fatty stools; nausea; occasional vomiting; migraines; extreme and constant fatigue; bloating; gas; lack of appetite; night sweats; severe vitamin D deficiency; low iron levels; low thyroid levels; inconsistent glucose levels; pain and burning in my joints; inability to find words or phrases (brain fog?), ADHD; depression; generalized anxiety disorder; C-PTSD, and more…

I’ve been down the Google rabbit hole and all signs, for me, point to Celiac. A few years ago, a doctor recommended an endoscopy for me based on some of these symptoms, but I didn’t have the $$$ or insurance to follow up at that time. Now that I have an appointment for evaluation on the books (next Wed), I find myself terrified that this doctor, who has never met me, is gonna think I’m some self-diagnosing WebMD nut and not take my symptoms seriously as a whole picture.

Has anyone experienced that? And how did/do you advocate for yourselves (or your children)?

Guess what? I was 38 before I self diagnosed and then went to the doctor and the doctor said “well the thing about Internet diagnosis is you may have all those symptoms but that doesn’t mean it’s what it is. Do you still want to get tested?”

Then my blood test was off the charts. My biopsy in my duodenal bulb was positive, but my duodenum biopsy was negative. If they do want to do a biopsy, make sure they do two samples. The bulb and the duodenum. it’s not standard in the states.

Have they ever run a full celiac panel on you before? Usually the blood test is what they do before they recommend an endoscope. Even for celiac the blood test could be negative. Make sure you are eating gluten every day about a piece of bread size before you go into the doctor and then have them do a blood test there or if they refer you to a lab you can make sure you’re doing it leading up to that.

I had low vitamin D and anxiety disorder diagnosis. I was also selectively lactose intolerant, but I’m not at all now being gluten-free.