Drs won't take me seriously

[Maryspoon]

So I can't get a DX because I can't eat enough gluten and my autism prevents me being able to go to the colonoscopy since there's just not enough support in place, I've been getting extreme fatigue and shortness of breath for years, drs checked everything says I'm fine, had x-rays, ecgs, blood tests ect I definitely notice it's worse when I get glutened, now I've realised even gluten free oats trigger it? And they definitely irritate my GI system, is this an ordinary symptom? I also have nerve pain in my feet for years which might have been caused by it too? And I get the rash on my hand that goes slowly when I'm not glutened in a long time so I'm 99% gluten is screwing with me, I started a strict gluten-free diet 2 yearsish ago, before I didn't eat much because it hurt but was more careful with traces ect and although my symptoms improved they've still not gone and are so debilitating because I can't work or anything due to being out of breath and exhausted all the time, I also get nausea and at it's worst lightheadedness, I check my obs(have a pulse oximeter) when I'm like this and they're normal, exertion defo make it worse, drs won't take me seriously and keep telling me it's anxiety but I know it's not and I'm just really struggling and any advice would be appreciated

[Hexagonal]

Well your doctors can't diagnose something they can't test for (particularly when there are reliable tests for the disease you want a diagnosis for). If you don't want to do a gluten challenge to get tested, that's understandable. You can continue to eat gluten free if it makes you feel better! You might also consider having the rash biopsied if it comes back. Another option might be a genetic test but doctors generally won't use that to diagnose either. 

[trents]

14 minutes ago, Maryspoon said:

So I can't get a DX because I can't eat enough gluten and my autism prevents me being able to go to the colonoscopy since there's just not enough support in place,

What do you mean by "not enough support in place?"

A colonoscopy is not the correct test for diagnosing celiac disease. A colonoscopy is used to scope the lower bowel. Celiac disease damages the lining of the upper (small) bowel so an endoscopy with biopsy is used to diagnose celiac disease.

About 10% of celiacs react to the protein "avenin" in oats the same way they do to gluten, a protein in wheat.

[Maryspoon]

8 minutes ago, trents said:

What do you mean by "not enough support in place?"

A colonoscopy is not the correct test for diagnosing celiac disease. A colonoscopy is used to scope the lower bowel. Celiac disease damages the lining of the upper (small) bowel so an endoscopy with biopsy is used to diagnose celiac disease.

About 10% of celiacs react to the protein "avenin" in oats the same way they do to gluten, a protein in wheat.

Due to my autism I really struggle with the diet before hand, the bowel prep and having the support during, that was what the drs referred me for but I'm still waiting on social services to give me a chaperone and would probably have a meltdown without due to over stimulation

They must not seem to think I have celiac then if they referred me for that, it's only because at it's worst I was passing blood that they referred me for anything other than a blood test for years, they say everything else is anxiety but idk if it's all celiac or I have celiac and something else maybe

13 minutes ago, Hexagonal said:

Well your doctors can't diagnose something they can't test for (particularly when there are reliable tests for the disease you want a diagnosis for). If you don't want to do a gluten challenge to get tested, that's understandable. You can continue to eat gluten free if it makes you feel better! You might also consider having the rash biopsied if it comes back. Another option might be a genetic test but doctors generally won't use that to diagnose either. 

I will look into this rash biopsy thank you

[Hexagonal]

18 minutes ago, Maryspoon said:

They must not seem to think I have celiac then if they referred me for that, it's only because at it's worst I was passing blood that they referred me for anything other than a blood test for years, they say everything else is anxiety but idk if it's all celiac or I have celiac and something else maybe

Did they say anything about Crohn's? They often do colonoscopies to check for that.

[Maryspoon]

7 minutes ago, Hexagonal said:

Did they say anything about Crohn's? They often do colonoscopies to check for that.

Can chrons imitate celiac? I think they did say it could be an IBD too at one point, can you have both? 

[Hexagonal]

7 minutes ago, Maryspoon said:

Can chrons imitate celiac? I think they did say it could be an IBD too at one point, can you have both? 

Crohn's and celiac are both autoimmune diseases that impact the digestive tract and can have similar symptoms. Crohn's is generally considered a more serious/dangerous disease that is more difficult to treat. I thought of Crohn's when you mentioned passing blood. Crohn's can cause damage and ulcers in the intestines and cause bleeding. IBD refers to Crohn's and ulcerative colitis. It is possible to have celiac and IBD at the same time but celiac is more common than Crohn's. Some people with Crohn's notice their flares and symptoms get worse with certain foods but it can be different for different people. 

[Scott Adams]

You mentioned that you've been gluten-free for two years now, but is it possible that you're getting regular trace amounts in your diet, perhaps if you eat at restaurants, friend's houses, medications, makeup, have roommates who are not gluten-free, etc.?

If you have celiac disease or non-celiac gluten sensitivity (around 10% of people have this, but no tests for it yet), you need to be 100% gluten-free to avoid the symptoms and possible adverse health effects, and this includes even trace amounts of gluten.

Perhaps you should eliminate oats, and re-check your diet going forward to be sure it's 100% gluten-free?

You may also want to keep a food diary, and see if you have additional food intolerance, for example cow's milk is a common one, but so are soy, corn, eggs, etc.

[Maryspoon]

12 minutes ago, Scott Adams said:

You mentioned that you've been gluten-free for two years now, but is it possible that you're getting regular trace amounts in your diet, perhaps if you eat at restaurants, friend's houses, medications, makeup, have roommates who are not gluten-free, etc.?

If you have celiac disease or non-celiac gluten sensitivity (around 10% of people have this, but no tests for it yet), you need to be 100% gluten-free to avoid the symptoms and possible adverse health effects, and this includes even trace amounts of gluten.

Perhaps you should eliminate oats, and re-check your diet going forward to be sure it's 100% gluten-free?

You may also want to keep a food diary, and see if you have additional food intolerance, for example cow's milk is a common one, but so are soy, corn, eggs, etc.

My husband eats gluten and could be giving me traces, I ask him a lot to be careful but he has ADHD 

 

And yeah I've noticed soy makes me ill but I think I'll have to be more thorough with figuring it out and try that diary like you said 

[Wheatwacked]

Since you have 

8 hours ago, Hexagonal said:

You might also consider having the rash biopsied if it comes back.

"Almost all patients with dermatitis herpetiformis have celiac disease, though the disease is asymptomatic."  https://my.clevelandclinic.org/health/diseases/21460-dermatitis-herpetiformis

It is not uncommon to have multiple autoimmune diseases simultaneously. 

9 hours ago, Maryspoon said:

drs won't take me seriously and keep telling me it's anxiety but I know it's not

I know the autism makes it hard dealing with it but sounds like you need a different doctor who will respect you.  If anxiety were the cause and not the result antianxiety meds alone would resolve your issues, but I get the impression it has not.

Raising your vitamin D plasma level may have beneficial effect on your Celiac, Autism and Anxiety. It helped me. I take 10,000 IU a day and my plasma levels are steady around 80 nm/ml and I am better for it.  At 47ng/ml in 2019 I would be affected by gluten, at >80 ng/ml since 2021 I have no clinical effect if I am gluttoned. It took 10,000 IU a day since 2015 (and GFD) to get to this level. Just last Friday my doctor said I should continue.  Unfortunately, most of the research into vitamin D divides the results into less than 30 ng/ml and more than 30, but almost nothing about the effect of higher levels. A study comparing <60 ng/ml vs. >60 ng/ml I suspect would be an eye opener. The safe zone is 30 - 120 ng/ml. It almost appears there is a strangle hold on the research.

"Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years."    https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

Vitamin D and autoimmune   "Numerous studies suggest that vitamin D has many other effects, such as the modulation and regulation of innate and adaptive immune responses"   https://bsd.biomedcentral.com/articles/10.1186/s13293-021-00358-3

Vitamin D and autism https://pubmed.ncbi.nlm.nih.gov/28217829/ ;

[Maryspoon]

8 hours ago, Wheatwacked said:

Since you have 

"Almost all patients with dermatitis herpetiformis have celiac disease, though the disease is asymptomatic."  https://my.clevelandclinic.org/health/diseases/21460-dermatitis-herpetiformis

It is not uncommon to have multiple autoimmune diseases simultaneously. 

I know the autism makes it hard dealing with it but sounds like you need a different doctor who will respect you.  If anxiety were the cause and not the result antianxiety meds alone would resolve your issues, but I get the impression it has not.

Raising your vitamin D plasma level may have beneficial effect on your Celiac, Autism and Anxiety. It helped me. I take 10,000 IU a day and my plasma levels are steady around 80 nm/ml and I am better for it.  At 47ng/ml in 2019 I would be affected by gluten, at >80 ng/ml since 2021 I have no clinical effect if I am gluttoned. It took 10,000 IU a day since 2015 (and GFD) to get to this level. Just last Friday my doctor said I should continue.  Unfortunately, most of the research into vitamin D divides the results into less than 30 ng/ml and more than 30, but almost nothing about the effect of higher levels. A study comparing <60 ng/ml vs. >60 ng/ml I suspect would be an eye opener. The safe zone is 30 - 120 ng/ml. It almost appears there is a strangle hold on the research.

"Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and suppressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years."    https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

Vitamin D and autoimmune   "Numerous studies suggest that vitamin D has many other effects, such as the modulation and regulation of innate and adaptive immune responses"   https://bsd.biomedcentral.com/articles/10.1186/s13293-021-00358-3

Vitamin D and autism https://pubmed.ncbi.nlm.nih.gov/28217829/ ;

Woah that's a lot of information! Thank you for your in depth reply! I agree I need a better Dr, I think with being autistic and a young woman with chronic problems they just don't listen properly and my explaining isn't always the greatest

I will have to give those a read today! Thank you:)

[1desperateladysaved]

MarySpoon;

I would suggest that you find a doctor/nutritionist  that can come along beside you and help you.  You sound much like I did 10 years ago.  I received help from a functional Medicine doctor  (Jeff Kotulski in Mankato, MN is a great one).   Functional medicine tries to get to the root of your illness and begins to grow your health.  

 I found online help from Teri Cochrane nutritionist.  She used my genetics and other tests to find a diet that is most helpful for me.  My nutrient levels are now very good.