Diagnosis Confusion Please Help

[SHGrade]

Hi, I really enjoy reading this site. However, I cannot get a doctor to agree on a diagnosis, so I was hoping someone here could help, maybe not a medical opinion but to help me understand.

I recently read Gluten Freedom by Dr. Fasano and am now more confused.

Almost 3 years ago, I had terrible joint pain after Thanksgiving Dinner. I was in agony all night, but the next day resumed my low-carb existence and ignored it. Christmas, same experience, absolute agony, wanted to die. I went to the doctor, and tested positive for Rheumatoid Factor (an instant diagnosis, you can have the disease without the factor, but you cannot have the factor without the disease) but was told I could not see a Rheumatologist for 6 months. I was not in agony every night, but could barely walk and was therefore desperate.

I knew nothing about Celiac disease at the time, so trying the Autoimmune Paleo Protocol did not seem like a bad thing. My joints healed, the swelling went down. That is an elimination diet, where you get rid of everything that could hurt you, then slowly add it back in, item by item. I was able to reintroduce everything but Gluten. Since I left it out of my diet, my sensitivity has increased like crazy. I often get sick (aggressive joint pain and diarrhea) from 'gluten-free" foods, but do well with Certified Gluten Free Foods, and very careful avoidance of CC. 

I also get sick from Carmel Color and Modified Food Starch which I understand do not have Gluten. 

Even though I am on serious treatment for RA (csDMARD and boDMARD), I am still in severe pain from "accidental" CC maybe once or twice a month.

I cannot be gold standard tested for Celiac disease, since a challenge is out of the question. My Rheumatologist called it Atypical Celiac, but Dr. Fasano did not seem to think that was a thing. He did, however, say the difference between sensitivity and  Celiac was whether it was innate or adaptive immunity acting, and mine is clearly adaptive.

Thoughts?

 

 

[Jmg]

Hello and welcome

1 hour ago, SHGrade said:

I cannot get a doctor to agree on a diagnosis, so I was hoping someone here could help, maybe not a medical opinion but to help me understand.

You've come to a good place. Obviously you can't get a diagnosis but I'm constantly amazed by the breadth of knowledge and experience here as well as the gems hidden away in past conversations. It's helped me considerably. 

43 minutes ago, SHGrade said:

I also get sick from Carmel Color and Modified Food Starch which I understand do not have Gluten. 

I think it's possible (if unusual) for caramel colour to have gluten and for Modified Food starch to be made with wheat, but if they do it should be listed in the ingredients. That's certainly the case for EU and I think it's also true for US? So it would be a matter of looking at the ingredients of the suspect foodstuffs. 

55 minutes ago, SHGrade said:

I cannot be gold standard tested for Celiac disease, since a challenge is out of the question. My Rheumatologist called it Atypical Celiac, but Dr. Fasano did not seem to think that was a thing. 

Firstly, I know what it's like to want that diagnosis, some certainty, but the only way to answer it is with a challenge. The advantage would be a potential degree of certainty, finding out if there's any villi damage to repair and follow up tests for nutrition deficiencies and antibody responses to the GFD. Disadvantages, it can be unpleasant to go through.   

Another way of looking at it is that you already have an answer. You get relief with the GFD which means its either Celiac or NCGS, there's only one treatment for either and that's the GFD, so to an extent it's an academic question. You can live your life as if you had the celiac diagnosis and continue to get the relief from symptoms. 

As for:

1 hour ago, SHGrade said:

He did, however, say the difference between sensitivity and  Celiac was whether it was innate or adaptive immunity acting, and mine is clearly adaptive.

Yes I hear you. I was left with NCGS as a default diagnosis after my negative scope and I wrestled with the same issue. Firstly as far as I understand itI don't think they think its exclusively innate, more that it's more expressed in the innate than celiac. See this from another leading researcher Umberto Volta: Open Original Shared Link 

There's some other links here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/#comment-974346

I came to the unscientific conclusion that understanding is still imperfect, that there's in all liklhood a 'spectrum' on which Celiac, NCGS and perhaps Ataxia all sit and that whichever you have depends on circumstances as yet unknown. Maybe they're different points on a progression, maybe an expression of genetic difference? There are others here with better knowledge who may be able to say more. I finally gave up looking for a definitive diagnosis.... 

There's also some links on testing and celiac here: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127 and the forum faq stickied above. Knock yourself out!

Hope this of help!

Matt

 

 

[ironictruth]

The way I have had it explained, coupled with reading, is that once the intestinal cells (IELs) start infiltrating in response to gluten, they prompt a release of cytokines and interleukin response which can cause an inflammatory response anywhere in the body. 

Celiac, potential celiac, ncgs, bacterial infection, HIV, graft vs host disease, whatever the cause, once the cells activate, weird stuff happens. 

My theory is that it is an attack on the enteroendocrine and nueroendocrine cells which are in multiple spots in the body and play roles in everything from mood regulation and vagal responses to release of histamines to support gastric acid production. If villi are attacked in some cases, they not the intended target. 

Either way. Keep reading/searching.  Jmg is right. The science is still progressing. But if you feel better off of the stuff then at least you have your answer. I am in your boat as well but am not feeling better so the need to include/exclude a diagnosis is that much more important to me. Is it a processed food I ate? Was a former 2 month no eating out trial not enough time? 

Good luck and best wishes!

 

[SHGrade]

Thanks for all the good links and thoughts. I sometimes have to take 3 days off work if I get CC Glutened because I cannot walk so it would be pretty devastating to come back clean in the gut after a challenge. A month of uncontrolled joint damage would take more than a year to recover from and I might not completely. Besides RA, and whatever I have with Gluten, I also have Type I Diabetes, so autoimmunity seems to be my curse.

Is there any value in the genetic test?

[cyclinglady]

With Both RA and TD1, I would not be convinced that genetic testing would be beneficial.  Some 30% has the genes that can develop into celiac disease (majority never develop it).  

I am officially diagnosed (four years).  Hubby went gluten-free 15 years ago per the advice of my allergist and his GP.  Good advice?  Not for correctly diagnosing celiac disease, but the gluten-free diet worked.  After 15 years, there is no doubt he has a gluten problem.  There is no way he would do a challenge (we like to pay our bills and eat ?).  

The bottom line is to be as healthy as possible.  Sounds like you are on the right track!  

P.S.  it sounds like you are still getting gluten into your diet.  For a while avoid as many processed foods as you can and do not eat out.  Learn more by reading our Newbie 101 thread under the "Coping" section.  

[Jmg]

1 hour ago, SHGrade said:

Is there any value in the genetic test?

I didn't bother pursuing one. I don't know how readily available they are here in the UK but it wasn't going to help me in any case. As far as I know it can be used to exclude celiac but not diagnose it. I think Open Original Shared Linkin conjunction with positive serology and reasponse to GFD to diagnose celiac without an endoscopy, but I doubt it would be sufficient for a diagnosis without a challenge. 

From what you say above I think you just need to 'assume celiac' and live as such. Like CyclingLady says above that means tracking down and eliminating any CC sources, because slipping up once a month is potentially harmful. 

Best of luck

 

 

[Gemini]

Quote

I went to the doctor, and tested positive for Rheumatoid Factor (an instant diagnosis, you can have the disease without the factor, but you cannot have the factor without the disease)

I don't know who told you that but it is not true.  I have positive RF and do not have RA.  RF can be elevated from other autoimmune diseases, such as Sjogren's Syndrome, which I do have.  You can have elevated RF without RA, but probably have another AI disease.

[SHGrade]

On 6/15/2017 at 10:20 AM, cyclinglady said:

With Both RA and TD1, I would not be convinced that genetic testing would be beneficial.  Some 30% has the genes that can develop into celiac disease (majority never develop it).  

I am officially diagnosed (four years).  Hubby went gluten-free 15 years ago per the advice of my allergist and his GP.  Good advice?  Not for correctly diagnosing celiac disease, but the gluten-free diet worked.  After 15 years, there is no doubt he has a gluten problem.  There is no way he would do a challenge (we like to pay our bills and eat ?).  

The bottom line is to be as healthy as possible.  Sounds like you are on the right track!  

P.S.  it sounds like you are still getting gluten into your diet.  For a while avoid as many processed foods as you can and do not eat out.  Learn more by reading our Newbie 101 thread under the "Coping" section.  

Yeah, I do not eat out at all, noticing carmel color and modified food starch were a problem a year ago, I have not eaten much processed food, when I say that "gluten free" is not enough, I mean like I cannot eat meat marked gluten free. It needs to be without seasonings or certified.

 

I actually had a severe RA reaction to Gazpacho (tomatoes, peppers, onions, whole garlic, cucumbers, salt, olive oil) made in my own clean kitchen with garden ingredients this weekend, so I think it's more that my gut is leaky again, not that I am continuing to get glutened. Thanks for the thought though.

[SHGrade]

On 6/15/2017 at 3:18 PM, Gemini said:

I don't know who told you that but it is not true.  I have positive RF and do not have RA.  RF can be elevated from other autoimmune diseases, such as Sjogren's Syndrome, which I do have.  You can have elevated RF without RA, but probably have another AI disease.

Oh, thanks, that was probably an overstatement by the clinician. He probably meant to add "With your symptoms."

[SHGrade]

On 6/15/2017 at 10:20 AM, cyclinglady said:

P.S.  it sounds like you are still getting gluten into your diet.  For a while avoid as many processed foods as you can and do not eat out.  Learn more by reading our Newbie 101 thread under the "Coping" section.  

 

I am not sure I am looking at the right page. Is it more than just a list of foods you can eat? Over half of those I cannot tolerate or make me sick.

I have dedicated kitchen space, utensils, appliances and dishes. I have replaced all my spices with gluten free versions. I don't eat out. 

I eat only veggies, meats and eggs.

Something I am missing on the newbie page?

[Gemini]

1 hour ago, SHGrade said:

 

 

I actually had a severe RA reaction to Gazpacho (tomatoes, peppers, onions, whole garlic, cucumbers, salt, olive oil) made in my own clean kitchen with garden ingredients this weekend, so I think it's more that my gut is leaky again, not that I am continuing to get glutened. Thanks for the thought though.

Is it possible you have a lectin problem?  The veggies you listed above contain large amounts of lectins and they are known to cause severe joint pain in those who cannot tolerate them.

[cyclinglady]

2 hours ago, SHGrade said:

I am not sure I am looking at the right page. Is it more than just a list of foods you can eat? Over half of those I cannot tolerate or make me sick.

I have dedicated kitchen space, utensils, appliances and dishes. I have replaced all my spices with gluten free versions. I don't eat out. 

I eat only veggies, meats and eggs.

Something I am missing on the newbie page?

It sounds like you are gluten free, but getting glutened once or twice a month is going to prevent healing if you have celiac disease.  For me personally, a glutening can set me back months (symptoms and antibody testing).  I hope you can figure it out.  

Here is the link:

 

[plumbago]

Hi,

I like as much information as possible, so after researching it a ton, I personally would get the genetic test. As for the factor/disease statement, I wonder if you’ve got it reversed? Just a thought.

What jumps out to me is you could be a little more careful with your diet, as you seem to be consuming inadvertent gluten relatively frequently.

Plumbago

[Pegleg84]

Chiming in here as one of those people without a confirmed diagnosis. I did have blood tests done a couple times which were negative (don't know if they ran a full panel or not), but my Mom has Celiac (confirmed diagnosis by biopsy), my sister also had negative blood tests but her biopsy was positive. I was sick of being sick and didn't want to wait however long it would take to do a biopsy (and right before a move), so I went gluten-free and never looked back. There's Celiac on both sides of my family, so could be a case of a double positive = negative. In any case, I have always concidered myself to have Celiac Disease and won't let anyone tell me otherwise.

As for your symptoms, you could have intolerances to other foods, not just gluten. Nightshades (potatoes, tomatoes, peppers, eggplant, etc) are known to be inflamatory. Also, I have trouble with eggs for some weird reason. You could be eating completely gluten-free at home and having problems with something else instead. Sounds like you're taking necessary precautions.

I was just diagnosed with Fibromyalgia, so I know what that "i can't move" pain is like. NOT FUN! Other people with Fibro have said going gluten-free helped them a lot. I have a friend with RA who has to eat gluten-free or her joints swell up bad. Even without Celiac, gluten and grains in general are hard to digest and hard on our systems.  Probably helpful for many auto-immune conditions.
 

So, might as well join the self-proclaimed Celiac club. I've never had genetic testing done either since I already know the answer to that, but if you want the information go for it. Best is to trust your gut and avoid whatever you have to. The doctors can call is NCGS if they need to, but best to treat it as Celiac.