Diagnosis Troubles...

[erikaf75]

I know they say that you can't test for Celiac with saliva. But I had the same test with the ND after 2 negative ttg Iga tests (no IgA panel or other tests done). My Gliadin results were 32 and I also showed a greatly depressed SIgA level (10). This would explain the 2 "negative" blood results I hade for TTG IgA test. I have the symptoms that match with inherited IgA deficiency, prone to infection and major sinus issues. I also had a GI panel that showed I had severe inflammation in my small intestine. I also have these symptoms: 

 

- severe chronic constipation (since infancy and resulted when gluten free)

- horrible bloating and gas

- rosacea

- hypothyroid (not autoimmune)

- two miscarriages and pregnancy complications

- unexplained hives

- cancer sores in my mouth

- keratosis pilaris

- unexplained dental problems - my teeth actually moved

- asthma

- arthritis in my knees (at age 28)

- lactose and other food intolerances

- weight gain

- depression

- fatigue

- muscle pain (when ingesting wheat)

- dyslexia

- wheezing

- tinnitus

- diagnosed IBS

- stomach pain

- some fatty stool

- some dizziness

- nausea related to consuming wheat

- prone to colds and flus, hard to recover, sick a lot

- constant sinus congestion

- intense cravings for carbs and wheat

- over eating, not feeling full easily

 

Also my mother and grandmother both had major symptoms that match celiac. My mother had thyroid cancer and grandmother died of dementia and both had major GI issues and food "allergies". Also have other family members with celiac like symptoms.

 

Now that I have been gluten free for several months, I cannot go back of get more blood work and an endoscopy. I would like to, but there is no way I am eating gluten again. I went to see an integrative physician who diagnosed me based on all this information. I am waiting to see what my family doctor says about referring me to a GE. I feel really pissed that I was not given more thorough testing when on gluten. My ND said I had a mild gluten intolerance and to cut it for a month and reintroduce it. After this advice I had 2 miscarriages. I had to research this and go back to the test to figure it out. I am very sure I have celiac disease, but now I feel I have no way to get tested...

 

Does anyone have any suggestions?

[nvsmom]

Unfortunately you are right.  There is no easy way to go back and get tested now.    This happens to many people when their doctors drop the ball - I'm guessing you'll hear from a few people that this happened to as well.

 

Blood tests will require 8-12 week gluten challenge for the most accurate blood test results. The endoscopic biopsy needs 2-4 weeks of a gluten challenge for accurate results.  Most doctors will need a positive in at least one of those before they diagnose you. A few doctors will diagnose "suspected" celiac disease based on symptom improvement, and a few more will say that if you add a positive genetic test and a family or personal history of autoimmune diseases.

 

Just remember that you do not need a diagnosis to treat celiac disease or non-celiac gluten intolerance (NCGI).  A 100% gluten-free diet is all you need, and it sounds like you are there already. Stay gluten-free and feel better, or do a gluten challenge, get tested, maybe get diagnosed, and then go gluten-free and feel better... You weren't left with many options.  

 

Best wishes with whatever you decide to do.

[erikaf75]

Unfortunately you are right.  There is no easy way to go back and get tested now.    This happens to many people when their doctors drop the ball - I'm guessing you'll hear from a few people that this happened to as well.

 

Blood tests will require 8-12 week gluten challenge for the most accurate blood test results. The endoscopic biopsy needs 2-4 weeks of a gluten challenge for accurate results.  Most doctors will need a positive in at least one of those before they diagnose you. A few doctors will diagnose "suspected" celiac disease based on symptom improvement, and a few more will say that if you add a positive genetic test and a family or personal history of autoimmune diseases.

 

Just remember that you do not need a diagnosis to treat celiac disease or non-celiac gluten intolerance (NCGI).  A 100% gluten-free diet is all you need, and it sounds like you are there already. Stay gluten-free and feel better, or do a gluten challenge, get tested, maybe get diagnosed, and then go gluten-free and feel better... You weren't left with many options.  

 

Best wishes with whatever you decide to do.

Thank you for your reply! I have decided that I will not take the gluten challenge and tests right now. I seem to not react to cross contaminated foods...and seem to have a more mild react to gluten than a lot of celiacs. That being said I do have all those symptoms and history in my family of other symptoms and complications...we really look like a classic celiac family. I didn't even mention all of it...both my mom and grandma have and had really bad osteoporosis.

 

I am genuinely unsure if I have full blown celiac or Non celiac gluten sensitivity (intolerance)...I know I have something and it is related to gluten and it is causing major health issues for me. Is it possible to have varying degrees of celiac? My husband's crohn's is considered a very mild case...so I wonder if I have mild celiac.

The truth is that I am fine with going off gluten for life regardless of a diagnosis. If I continue to have problems or notice cross contamination issues, I may opt to do the challenge and the biopsy since that takes less gluten ingestion and seems to still be the gold standard. I am not extremely motivated to engage doctors unless it is critical...since I have had such negative experiences going down that path in the past.

 

I have learn a lot about NCGS and I realize how little they seem to know about it. I feel like it is similar to diabetes type 2, maybe they will learn more in the next decade or so we will learn it is actually celiac type 2. Because what is happening with me is more serious than just a regular food intolerance. But maybe I really do just have a mild case of celiac. I hate not truly knowing, the answer would bring much closure for my own suffering and generations of suffering in my family.

Thanks again for the support...Erika

 

[nvsmom]

NCGS is sometimes found to be "early" celiac disease - the illness just hasn't advanced enough to show up on testing. That's not true in everyone with NCGS, but for some it is.

 

There is not really any such thing as mild celiac disease.  Some people present with stronger symptoms but those are just symptoms, there is a LOT going on inside like chronic inflammation (as opposed to swelling) that can mess one up over time.  The first twenty years of my disease involved more stomach aches and headaches than the average person but at age 20 I still went to university, worked two jobs and rowed on the junior varsity team. I had mild symptoms but I had already had a complication that critically affected my blood and then I developed thyroid problems and arthritis a few more years later... I think being gluten-free 20, 30 or 40 years ago could have nipped those health problems in the bud.

 

Today I still don't react as strongly as some. If I get glutened I just feel poorly. Migraine, stomach ache and fatigue - sick enough to want to take it easy on the couch but well enough to get on with my life without a problem.

 

Anyway, my babbling is to point out that if you have celiac disease, you need to be 100% gluten-free with zero chances of cc. If you get glutened you may not feel that bad, but if it happens frequently you could pay for it down the road. KWIM?

 

And maybe see if you can get some of your family to get tested. If they have positive tests, they'll have the chance to get better and you'll have more information too.  

 

Welcome to the boards.  

[erikaf75]

NCGS is sometimes found to be "early" celiac disease - the illness just hasn't advanced enough to show up on testing. That's not true in everyone with NCGS, but for some it is.

 

There is not really any such thing as mild celiac disease.  Some people present with stronger symptoms but those are just symptoms, there is a LOT going on inside like chronic inflammation (as opposed to swelling) that can mess one up over time.  The first twenty years of my disease involved more stomach aches and headaches than the average person but at age 20 I still went to university, worked two jobs and rowed on the junior varsity team. I had mild symptoms but I had already had a complication that critically affected my blood and then I developed thyroid problems and arthritis a few more years later... I think being gluten-free 20, 30 or 40 years ago could have nipped those health problems in the bud.

 

Today I still don't react as strongly as some. If I get glutened I just feel poorly. Migraine, stomach ache and fatigue - sick enough to want to take it easy on the couch but well enough to get on with my life without a problem.

 

Anyway, my babbling is to point out that if you have celiac disease, you need to be 100% gluten-free with zero chances of cc. If you get glutened you may not feel that bad, but if it happens frequently you could pay for it down the road. KWIM?

 

And maybe see if you can get some of your family to get tested. If they have positive tests, they'll have the chance to get better and you'll have more information too.  

 

Welcome to the boards.  

 Thank you! This is very helpful. I did call a GE clinic near where I live. The nurse I spoke to encouraged me to just get an endoscopy. She said it is not a big deal and that I may not even need to eat gluten, that I may still have residual damage in the small intestine. So, I may go in, I am waiting for them to call back. I think that it is important for my son that I get a clear idea of my diagnosis...other family members are not likely to get tested. I understand what you mean by milder symptoms vs an actual milder case. When I think about all the issues I have had I don't consider my symptoms and related health issues to be that mild. Arthritis at age 28 is not normal and my thyroid never seems to improve enough on medications...my miscarriages and pregnancy issues where a nightmare. So, I think if I have to suck it up and eat gluten for a few weeks and feel like crap, maybe I just need to. I am not looking forward to it. I ate a half a bagel the day before I figured this out and I felt like crap for 2-3 days after...migraine, muscle pain, GI issues, fatigue...so I am not looking forward to it. But what you told me makes me realize that I need to get clear about this for my son's sake. He has had severe constipation since starting solid foods (same as me when I was a baby) and been on miralax for all his little life...so I think I need to get to the bottom of this. What you said about cc really makes me realize that I could do damage and not even know.

 

I will do another post here once I get some more info on the next step. I am so glad to find this community. This has been a life long struggle and very painful for me...so it is good to talk to people who get it and have such valuable knowledge.

 

Thank you again!

[nvsmom]

Good luck with the gluten challenge. i hope it isn't too hard on you!  

[erikaf75]

Good luck with the gluten challenge. i hope it isn't too hard on you!  

Thanks, The GE specialist want me to eat a ton of gluten for 4 weeks.

 

I actually spoke to my ND today and she wants to do a genetics test to see if we have the markers for celiac. She says we should try to avoid wheat consumption as much as possible. There is also another test she can do that looks at some biomarkers for celiac. I know that regular allopathic doctors would not see this as a diagnosis tool. But it is a step in the right direction and I can always do the conventional tests later.  The ND is worried because my adrenals have been in bad shape and my thyroid....I'll keep you posted on what I learn. My Mom, son, and husband are all going to do the same tests so I hope that will really help shed some light.

[erikaf75]

Thanks, The GE specialist want me to eat a ton of gluten for 4 weeks.

 

I actually spoke to my ND today and she wants to do a genetics test to see if we have the markers for celiac. She says we should try to avoid wheat consumption as much as possible. There is also another test she can do that looks at some biomarkers for celiac. I know that regular allopathic doctors would not see this as a diagnosis tool. But it is a step in the right direction and I can always do the conventional tests later.  The ND is worried because my adrenals have been in bad shape and my thyroid....I'll keep you posted on what I learn. My Mom, son, and husband are all going to do the same tests so I hope that will really help shed some light.

So the gastro specialist said they made be able to just do the genetics testing, enough though it is less definitive. I have to go in for a consult. I have to decide if I want to do that or just get tested through my ND. Meanwhile, I will see if I can get a test done for my son and my Mom is going tomorrow. I am more convinced now because last night my husband got me "gluten free" pad thai from a fast food place while we were at the ER (my son fell, he is okay now) and I just had really bad diarrhea and having back pain now. I found a wheat macaroni noodle in it while eating it...so it was definitely cross contaminated. I am more convinced of that this is celiac.