5yrs gluten-free & worse - missed diagnosis?

[R O]

I need direction please. Is it too late to get diagnosed?

I have most of the symptoms of Celiac. 5yrs ago I was told I was gluten intolerant, put on gluten-free FODMAP. I've followed gluten-free strictly ever since aside from accidental exposure and cross contamination.

MD pulled IGA - ( result 399 out of 400), and Transglutiminase IGA (resulted .6 out of .69). He deemed that as enough to say no celiac go gluten-free. I didn't know any better at the time. No endoscopy. No other blood work bc most of my basic "ranges" were w,/in "normal." No DNA test. I was extremely sick st the time and throwing my cookies every time I ate, in addition to a plethora of other symptoms I know now should have been a red flag. Symptoms didn't start improving for at least 3mo but I stuck with it. 

Fast forward. I'm facing. Hashimoto's, miscarried my first baby, and am back to an extremely limited list of foods that don't cause me pain and troubles. I don't want to make this post long with all the symptoms, but checking multiple resources they align with Celiac. The high thyroid antibodies scared me. I feel like if I could have gotten a clear diagnosis 5yrs ago I would have known what other things to look out for and what tests to get, how often, and how to manage my health, not to mention being more vigilant about avoiding cross contamination/exposure.

I read that blood tests rely on consumption of gluten for accuracy. When mine were pulled I had already figured out grains bothered me and had cut most out. Now I'd have to do a "gluten challenge" to test - that sounds like a death wish! Even a crumb sends me spiraling for a minimum of 3 days. 

So I got a DNA test, prepared for the answer either way, and it comes back INCONCLUSIVE?! 😭 I  understand that the DNA test is mot diagnostic, but how is this even possible? I thought you either had the genes or you don't.

I would like to get with a specialist, but idk what to ask for, what you kind of MD to see, or if I should just give up?

I would 100% do a capsule endoscopy but at 5yrs gluten-free would it even be worthwhile?

Someone please help if you're able 💕

 

[trents]

Do you really need the confirmation given by testing? Seems to me you have figured out that you must avoid gluten. Unfortunately, some health problems still seem to unfold even after going gluten free because of the dysfunction already created in our immune systems before we started gluten-free living. This is especially true for people who suffered from celiac disease for years before figuring it out one way or another.

[GFinDC]

https://www.cureceliacdisease.org/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease/

Hashimoto's Thyroiditis is associated with celiac disease.  Your Hashimoto's Thyroiditis may or may not get better on the gluten-free diet.  The symptoms from Hashimoto's can overlap in some ways with celiac disease.  They can both cause diarrhea, constipation, and mood issues like anxiety or depression.

The gene tests are not diagnostic for celiac disease.  About 30% of people have one of the genes for celiac disease.  But only 1% or less get active celiac disease.  There are also more genes for celiac recognized in some countries then what they test for in the USA.  Some people don't have any of the genes but still have celiac disease.

Celiac is an auto-immune disease.  The immune system has to be very sensitive to protect us from microscopic germs etc.  So even minor cross contamination can cause a reaction.  Things like shared toasters or peanut butter jars, or kissing a gluten eater can be problems.  Also, some of us react to oats, and they put them in many gluten-free labeled foods.  Dairy is also a possible problem and many other foods.

 

 

Edited February 3, 2021 by GFinDC

[Scott Adams]

If your symptoms when eating gluten are so severe you may want to forgo a formal diagnosis and not torture yourself further...it seems you have the answer.

[R.O.]

On 2/3/2021 at 1:28 AM, trents said:

Do you really need the confirmation given by testing? Seems to me you have figured out that you must avoid gluten. Unfortunately, some health problems still seem to unfold even after going gluten free because of the dysfunction already created in our immune systems before we started gluten-free living. This is especially true for people who suffered from celiac disease for years before figuring it out one way or another.

Thanks for taking time to respond. I suppose a confirmation isn't required, however without it I'm at the mercy of doctors in my area not taking me seriously. I have yet to find a local MD who views "gluten intolerance" as a valid diagnosis (besides the one who diagnosed me  who is now retired. I'm putting in the work self educating which is how I wound up here... I just wonder if I'm 5 years in and just learning about cross contamination and related health problems, what else might I miss as a patient, not a medical professional? I haven't had any follow up - all the tests I've gotten recently have been on my own accord reading and requesting what seems logical based on medical sites and research publications.

What you pointed out makes sense. I'd been sick longer than I have been gluten free so it's possible I'm not healed fully yet. It's safe to say I am very overwhelmed trying to navigate this solo though! I joined a few support groups so hopefully that will help.

[R.O.]

On 2/3/2021 at 12:22 PM, Scott Adams said:

If your symptoms when eating gluten are so severe you may want to forgo a formal diagnosis and not torture yourself further...it seems you have the answer.

Yes seems logical Scott. I just hope I don't miss anything else I would need to know. I *think* I have gleaned all what to look out for and what tests to ask for to maintain health moving forward myself, however I can't be confident I'm seeing the entire picture as I'm not a medical professional. I agree it doesn't make sense to further torture myself. If I move forward with the answers I have I can hope that is enough to advocate for myself.

[R.O.]

On 2/3/2021 at 7:48 AM, GFinDC said:

https://www.cureceliacdisease.org/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease/

Hashimoto's Thyroiditis is associated with celiac disease.  Your Hashimoto's Thyroiditis may or may not get better on the gluten-free diet.  The symptoms from Hashimoto's can overlap in some ways with celiac disease.  They can both cause diarrhea, constipation, and mood issues like anxiety or depression.

The gene tests are not diagnostic for celiac disease.  About 30% of people have one of the genes for celiac disease.  But only 1% or less get active celiac disease.  There are also more genes for celiac recognized in some countries then what they test for in the USA.  Some people don't have any of the genes but still have celiac disease.

Celiac is an auto-immune disease.  The immune system has to be very sensitive to protect us from microscopic germs etc.  So even minor cross contamination can cause a reaction.  Things like shared toasters or peanut butter jars, or kissing a gluten eater can be problems.  Also, some of us react to oats, and they put them in many gluten-free labeled foods.  Dairy is also a possible problem and many other foods.

 

 

thanks GFinDC. I appreciate the article. Your notes jive with what I've been reading since my post. Maybe the next step is to give up on getting an official diagnosis if there isn't an option for me anyway, and focus on what other areas I can try to improve my symptoms. Ultimately the goal is health, I just haven't had the best of luck with doctors in my area being knowledgeable about gluten intolerance or hashimoto's, or POTS (I kind have that in remission thankfully going gluten-free also helped that too). Right now I am focused on trying to find an MD who will be knowledgeable so I have a medical professional to trust as I navigate the road to better health. Thanks again for your support.

[trents]

44 minutes ago, R.O. said:

Thanks for taking time to respond. I suppose a confirmation isn't required, however without it I'm at the mercy of doctors in my area not taking me seriously. I have yet to find a local MD who views "gluten intolerance" as a valid diagnosis (besides the one who diagnosed me  who is now retired. I'm putting in the work self educating which is how I wound up here... I just wonder if I'm 5 years in and just learning about cross contamination and related health problems, what else might I miss as a patient, not a medical professional? I haven't had any follow up - all the tests I've gotten recently have been on my own accord reading and requesting what seems logical based on medical sites and research publications.

What you pointed out makes sense. I'd been sick longer than I have been gluten free so it's possible I'm not healed fully yet. It's safe to say I am very overwhelmed trying to navigate this solo though! I joined a few support groups so hopefully that will help.

I think you are beginning to discover what most of us have concluded. Namely, the medical profession is just not up to speed on gluten related diseases and so, you must become your own advocate. By now, you probably know more than 90% of the doctors do about gluten related diseases and your best option is continued self-education.