What are my next steps?

[David55]

Hey guys,

I will try and keep this as short and concise as I can. About a year ago, I had a very long day at work and ate a lot of chicken wings and a very poor diet. The next week, I felt terrible. I head headaches, GI issues, fatigue and some muscle aches and nasal congestion. I thought it was just a stomach bug, but a cycle of this sickness continued throughout the whole summer. Basically every other week I would be sick with fatigue, headaches, nausea, GI issues and I felt feverish and nasal congestion.  I finally went in for blood work (CBC, vitamin and mineral levels were tested) and everything came back normal. I was perscribed a probiotic and it didnt help. A couple months later, I went in for a colonoscopy and an endoscopy and tested negative for Celiacs and just had mild acid reflux. I still stopped eating gluten since January and felt better. However, there were still times that I felt "crappy" again. This could have been from cross contamination or me just eating gluten. But basically, I came home from college and I felt great for about 6 weeks. Then, I accidentally ate Ragu sauce that was not gluten free and I felt crappy again with feverish feeling, headaches, fatigue, nasal congestion and  diziness. Ever since then, I have felt "crappy" 3 seperate times. Two weeks ago, I ate meatloaf twice with bread crumbs and  a whole beer (which i knew was gluten). A couple days after I ate the meatloaf, I started to get headaches and the past couple days (about a week after drinking the beer) have been terrible with bad headaches, body aches and feverish with nasal congestion again (so ive been sick for about 12 days in a row now) I am scheduled to go in to see an allergist in about a month.....

1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity.....

2) Do my symptoms match up with a person with a gluten intolerance?

THANK YOU FOR READING THIS WHOLE THING. I REALLY NEED AND APPRECIATE THE HELP!!!

[Gluten-free-01]

On 21. 8. 2017 at 8:34 PM, David55 said:

1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity.....

Hi David, there are 3 different conditions basically: Celiac disease, non celiac gluten sensitivity and wheat allergy. 

Celiac disease - blood tests:

Gliadin IgG 

Gliadin IgA 

Endomysium IgG 

Endomysium IgA 

ttg IgG 

ttG IgA 

total IgA - this is not a celiac disease test as such but your total IgA level - some people are IgA deficient so it has to be checked so that you can be certain that the results of the other tests are valid

YOU HAVE TO EAT GLUTEN DAILY FOR THESE TESTS TO GIVE ACCURATE RESULTS. 

NCGS: there are no tests available - symptoms getting better on the gluten-free diet 'is the test'

Wheat allergy: another immunoglobulin class is used: IgE   

On 21. 8. 2017 at 8:34 PM, David55 said:

2) Do my symptoms match up with a person with a gluten intolerance?

Yes. Headaches, fatigue, nausea, GI issues are common. I'm not so sure about nasal congestion and being feverish - maybe allergy more likely than celiac disease/ncgs for these two.

(Sorry about mistakes - not a native English speaker.)

[Jmg]

On 8/21/2017 at 7:34 PM, David55 said:

1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity.....

2) Do my symptoms match up with a person with a gluten intolerance?

Hi David and welcome

GF01 has given you good advice. It may also be a good idea to hunt out the results of your previous test if you have them and post them here. 

When you see the allergist you can discuss your options but basically you can either pursue further testing, which could mean going back on gluten and feeling crappy, or just self declare at this point that you're either an undiagnosed celiac or you have Non Celiac Gluten Sensitivity and rigorously avoid gluten for life.

Given what you've posted I think the latter is a good choice.  You know it messes with you so there's not a great deal to be gained from further testing unless you need it for insurance purposes or to encourage relatives to check their own health. but it's down to you!

If you're staying gluten-free in the future find some advice here: https://www.celiac.com/forums/topic/91878-newbie-info-101/

For more on NCGS see this thread: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/

For some links on Celiac testing: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127

Finally, this forum helped me a lot, post any questions here and the community will do their best to help.

Best of luck!

[David55]

On 8/23/2017 at 10:39 AM, Gluten_free_01 said:

Hi David, there are 3 different conditions basically: Celiac disease, non celiac gluten sensitivity and wheat allergy. 

Celiac disease - blood tests:

Gliadin IgG 

Gliadin IgA 

Endomysium IgG 

Endomysium IgA 

ttg IgG 

ttG IgA 

total IgA - this is not a celiac disease test as such but your total IgA level - some people are IgA deficient so it has to be checked so that you can be certain that the results of the other tests are valid

YOU HAVE TO EAT GLUTEN DAILY FOR THESE TESTS TO GIVE ACCURATE RESULTS. 

NCGS: there are no tests available - symptoms getting better on the gluten-free diet 'is the test'

Wheat allergy: another immunoglobulin class is used: IgE   

Yes. Headaches, fatigue, nausea, GI issues are common. I'm not so sure about nasal congestion and being feverish - maybe allergy more likely than celiac disease/ncgs for these two.

(Sorry about mistakes - not a native English speaker.)

Thank you for the very thorough response! I am at a dead end really with this. My family does not think that I am really sick and it is very frustrating. But luckily, I got the appointment with the allergist in 3 weeks now. I am going to discuss my symptoms with the allergist and see what she thinks and reccomends. Do you think they would run those blood tests? I already got an upper endoscopy and they did a biopsy and it came back negative for Celiacs, so do you think it is worth still getting the blood tests? Also, I have bad anxiety and I do not think that this helps with whatever I have going on. Two weeks ago, I ate a lot of gluten (a beer, 2 servings of meatloaf) within 3 days. I felt crappy the week after but then I decided to eat healthier hoping it would help my symptoms and I put garlic on all of my chicken....I had 6 chicken breasts total in about 4 days. The garlic says it may contain wheat. I do not know if I have a bug or what but I have not been this nauseous in a long time and I have bad achy legs, which I usually do not get too often. Sorry for the long response but just trying to get an idea of what I need to do to prep for my appointment! Thank you again!

[David55]

On 8/23/2017 at 11:18 AM, Jmg said:

Hi David and welcome

GF01 has given you good advice. It may also be a good idea to hunt out the results of your previous test if you have them and post them here. 

When you see the allergist you can discuss your options but basically you can either pursue further testing, which could mean going back on gluten and feeling crappy, or just self declare at this point that you're either an undiagnosed celiac or you have Non Celiac Gluten Sensitivity and rigorously avoid gluten for life.

Given what you've posted I think the latter is a good choice.  You know it messes with you so there's not a great deal to be gained from further testing unless you need it for insurance purposes or to encourage relatives to check their own health. but it's down to you!

If you're staying gluten-free in the future find some advice here: https://www.celiac.com/forums/topic/91878-newbie-info-101/

For more on NCGS see this thread: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/

For some links on Celiac testing: https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127

Finally, this forum helped me a lot, post any questions here and the community will do their best to help.

Best of luck!

Hello! Thank you for the very helpful response  Like I said in my reply above, my symptoms are so vague (fatigue, headache, etc) that I'm worried about the many thing it could be. However, having done the blood tests makes me more confident that it has to do with a food allergy along with having GI symptoms. Im just very stressed and confused about what is going on with me because of how hard a pure and strict gluten diet is. It is interesting though that I have read that sometimes it takes up to 5-6 months to be better once going gluten free (which was about the time i started seeing complete relief). But I just recently ate a lot of gluten and I cant tell if I have a bug or if it was from the gluten that I ate. I have not eaten it in a while and I dont know if its my bodys reponse to haven not eaten it in a while or (like i said) if its just a bug. Thank you again for the reponse!

[Jmg]

1 minute ago, David55 said:

Im just very stressed and confused about what is going on with me because of how hard a pure and strict gluten diet is

If you think that you will struggle to stay gluten free without a diagnosis then consider doing a gluten challenge and begin the testing process.  I did this and by keeping a diary during the challenge period I was able to see my symptoms returning with the gluten and once I knew just how bad it made me feel I knew I would never knowingly eat it again regardless of the results. 

 

3 minutes ago, David55 said:

But I just recently ate a lot of gluten and I cant tell if I have a bug or if it was from the gluten that I ate. I have not eaten it in a while and I dont know if its my bodys reponse to haven not eaten it in a while or (like i said) if its just a bug.

It can be difficult to tie one off illnesses to gluten exposure. After all, non celiacs/NCGS people get ill too. If you don't have the reassurance of a positive test to confirm the link the next best step is to keep a food and symptom diary so that you can trace how you were feeling as you remove / add gluten. Sometimes I think people can have a very good idea from their bodies reactions but find the thought of the diet too scary and intimidating and find themselves in a state of denial. I'm not saying this is the case for you, but it can and does happen. 

You have experienced positive results on the diet and negative results when you've abandoned it. You need to decide what you are going to do with that info - some decide to continue eating gluten and live with the consequences, I don't think thats a good idea but then my symptoms are unbearable to me and far outweigh any sacrifices brought about by the diet.

 

[squirmingitch]

You said you had a biopsy. Do you mean one? The endoscopic biopsy for celiac is not just ONE biopsy but 6 biopsies are recommended. Again, do you have copies of the pathology report? What do they say & I don't mean.....negative.....I mean what do they say in the detailed portion. It should say how many biopsies were taken from which parts of the small intestine and detail the findings in words.

Above, you said:

 However, having done the blood tests makes me more confident that it has to do with a food allergy along with having GI symptoms. 

What are you talking about? Having had what blood tests? Celiac blood tests or are you talking about allergy tests? If you had the celiac panel, then which tests were done & what were the ranges. Had you been gluten free when these tests were done? In order for celiac blood panel to be valid & not return false negatives, you need to have been eating gluten each day for 12 weeks prior. For the endoscopy, you need to have been eating gluten each day for a minimum of 2 weeks prior.

We just need you to clarify this stuff because, I for one, am having a hard time figuring out what you did, what tests you had and at what point.

[Gluten-free-01]

David: The most important thing is not to panic. You said something about college so I think you're young - that makes things easier because the earlier you find out you have this intolerance/allergy/disease the better. 

Don't worry about other people - most people live on gluten foods, love these foods and are not able to comprehend that it is literally poison for others. I won't even go into people commenting on body weight.. you're so skinny.. stuff like that (my personal experience :-) ) The goal is to ignore them.

The realization of the condition/diagnosis can be a bit of a shock - that's normal. As Matt (Jmg) said, it's important not to go into denial about it. This ruins everything.

The diet as such is rescritive but not unrealistic. Compared to other diets, like strict low carb diets (i.e. no sugar, no carbs at all, no yeast etc.), it's easy.        

(Sorry about my English.)

[Gluten-free-01]

1 hour ago, David55 said:

But luckily, I got the appointment with the allergist in 3 weeks now. I am going to discuss my symptoms with the allergist and see what she thinks and reccomends. Do you think they would run those blood tests? I already got an upper endoscopy and they did a biopsy and it came back negative for Celiacs, so do you think it is worth still getting the blood tests? 

I guess an allergist will probably run the 'wheat allergy' test (IgE) and/or skin prick tests for food allergies. In general, celiac disease blood tests (IgA, IgG) are usually run by gastroenterologists or GPs. 

Btw I think my English is terrible so maybe I shouldn't give any more advice :-)    

[squirmingitch]

1 minute ago, Gluten_free_01 said:

I guess an allergist will probably run the 'wheat allergy' test (IgE) and/or skin prick tests for food allergies. In general, celiac disease blood tests (IgA, IgG) are usually run by gastroenterologists or GPs. 

Btw I think my English is terrible so maybe I shouldn't give any more advice :-)    

There is nothing wrong with your English! You've been quite understandable. 

[Gluten-free-01]

25 minutes ago, squirmingitch said:

There is nothing wrong with your English! You've been quite understandable. 

Thank you.

[squirmingitch]

3 hours ago, Gluten_free_01 said:

Thank you.

You're welcome. I only speak the truth. I admire anyone who learns a second language. In fact, if you had not told us English is not your native language, I don't think anyone would have guessed.

[David55]

10 hours ago, squirmingitch said:

You said you had a biopsy. Do you mean one? The endoscopic biopsy for celiac is not just ONE biopsy but 6 biopsies are recommended. Again, do you have copies of the pathology report? What do they say & I don't mean.....negative.....I mean what do they say in the detailed portion. It should say how many biopsies were taken from which parts of the small intestine and detail the findings in words.

Above, you said:

 However, having done the blood tests makes me more confident that it has to do with a food allergy along with having GI symptoms. 

What are you talking about? Having had what blood tests? Celiac blood tests or are you talking about allergy tests? If you had the celiac panel, then which tests were done & what were the ranges. Had you been gluten free when these tests were done? In order for celiac blood panel to be valid & not return false negatives, you need to have been eating gluten each day for 12 weeks prior. For the endoscopy, you need to have been eating gluten each day for a minimum of 2 weeks prior.

We just need you to clarify this stuff because, I for one, am having a hard time figuring out what you did, what tests you had and at what point.

Hi, I am sorry for the vagueness of my response. But, I honestly do not know how many biopsies they took. I should probably figure that out. As for the blood tests, I meant that my CBC levels were fine and vitamin and mineral levels were fine as well.

[frieze]

6 hours ago, David55 said:

Hi, I am sorry for the vagueness of my response. But, I honestly do not know how many biopsies they took. I should probably figure that out. As for the blood tests, I meant that my CBC levels were fine and vitamin and mineral levels were fine as well.

there is fine, and there is fine.  get copies of results, ASAP.  WNL, is not always "fine".

[Gluten-free-01]

5 hours ago, frieze said:

there is fine, and there is fine.  get copies of results, ASAP.  WNL, is not always "fine".

Just a few more ideas: I agree that it's better to have your own copies of the results, if possible. You could see 1) which tests exactly were run and 2) if the results were really 'normal' or maybe borderline low/high for some of them. 3) We don't know when exactly you were tested.. if it was a year ago or so, some of the levels might have changed. 4) Doctors can't be trusted 100%. If a doctor is very unprofessional (like my current GP :-) ) then it's just better to see the results yourself and interpret them yourself.  

Good luck.