Symptoms calming down?

[Flyttfag3l]

Hi All,

In February of this year, I was negative on recent blood tests for Celiac (TTG IGA antibody negative and normal IGA). I have primary Sjögren’s syndrome and my mom is a seronegative celiac. My iron levels have been slightly low, but I am also regularly supplementing With a super B complex, D and Iron. I asked for the testing due to starting methotrexate for my sjogrens, yet still having horrible fatigue, brain fog, joint pain, stomach pains, diarrhea, constipation, cystic acne, increase in migraines. Once the bloodwork came back negative, I figured “I must just be NCGS” so I eliminated for gluten completely for 29 days before my annual physical. At the appointment, I was surprised that my doctor wanted me to do a gluten challenge and endoscopy. My endoscopy is scheduled for July and I’ve been on a glutenous diet since the end of March.
The first month or so was awful. Terrible GI symptoms with clear cause and effect from meals. Migraines, awful acne, scary brain fog (could never find my keys, no short term memory, etc), mood swings, joint pain, fatigue. Classic celiac symptoms. The weird thing is over the past two weeks or so it’s like the GI symptoms have subsided. It started first with me being constipated, but now things are calmer. The emotional/ brain fog and fatigue are still in full effect, but I feel so strange that I don’t feel worse. I thought the longer I ate it the more horrible I would feel.

So my question is, do symptoms ever ebb and flow this much? Has anyone ever had a pattern where they have their worst symptoms when they eliminate then reintroduce and then some symptoms calm down?

sorry for the wall of text, these issues are so complex! TIA

[trents]

Welcome to the forum, flyttfag31!

We do know that if you have been gluten free for a significant amount of time you lose all tolerance such that when you accidentally get glutened your reaction is typically much more severe than when you were consuming gluten regularly. At least it works that way for those who do have celiac disease. I'm assuming it's much the same for those with NCGS. So, my thinking here is that just as you lose tolerance when you go off gluten you regain it if you persist on reintroducing gluten to the diet regularly. Also, it might be helpful to know that some experts believe NCGS may be a precursor to celiac disease. Have you had the genetic testing done yet? And when you had the antibody testing done it does not sound like a full celiac panel was done, just the tTG-IGA and total IGA. Some people who actually do have celiac disease test negative for the tTG-IGA but positive for other other celiac antibodies.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Flyttfag3l]

Hi Trents!

thanks for your thoughtful reply. You are correct that I have not had a full panel despite what I asked for. Instead, my Dr. Scheduled the endoscopy. I plan to do the genetic testing on my own before the scope appointment. I will also continue to eat gluten despite the exhaustion, fog, reflux, acne, etc (can’t wait to be done)!

Anyone else here have a similar experience where symptoms were quiet for a bit?

thanks everyone!
 

[trents]

25 minutes ago, Flyttfag3l said:

Hi Trents!

thanks for your thoughtful reply. You are correct that I have not had a full panel despite what I asked for. Instead, my Dr. Scheduled the endoscopy. I plan to do the genetic testing on my own before the scope appointment. I will also continue to eat gluten despite the exhaustion, fog, reflux, acne, etc (can’t wait to be done)!

Anyone else here have a similar experience where symptoms were quiet for a bit?

thanks everyone!
 

We have had a few posters who claimed to have experienced a period of remission. But this does not seem to last. It seems more common with children whose immune systems are still under development.

[Flyttfag3l]

Just now, trents said:

We have had a few posters who claimed to have experienced a period of remission. But this does not seem to last. It seems more common with children whose immune systems are still under development.

Fascinating!

I asked my rheumatologist if taking my immunosuppressant drugs that I take for sjogrens would calm down autoimmune activity everywhere and he said “not likely”. 

[trents]

11 minutes ago, Flyttfag3l said:

Fascinating!

I asked my rheumatologist if taking my immunosuppressant drugs that I take for sjogrens would calm down autoimmune activity everywhere and he said “not likely”. 

I am not a physician but that I know of, there is no immunosuppressant drug that is so targeted that it does not have at least some systemic effect. I mean, think about all those TV commercials that advertise immunosupressants for psoriasis, crohns, and you name it and they all have disclaimers that they can increase your risk for cancer and various infections. Why, because they all have at least some general suppressing effect on the immune system.

[Flyttfag3l]

12 minutes ago, trents said:

I am not a physician but that I know of, there is no immunosuppressant drug that is so targeted that it does not have at least some systemic effect. I mean, think about all those TV commercials that advertise immunosupressants for psoriasis, crohns, and you name it and they all have disclaimers that they can increase your risk for cancer and various infections. Why, because they all have at least some general suppressing effect on the immune system.

I had totally the same logic and he said that research shows that the drugs to treat many AI diseases are “more targeted” although I have heard of similar immunosuppressive therapies used to treat refractory celiac disease.

either way I had pizza for dinner. 50/50 tomorrow is a rough day at work!

[trents]

5 minutes ago, Flyttfag3l said:

I had totally the same logic and he said that research shows that the drugs to treat many AI diseases are “more targeted” although I have heard of similar immunosuppressive therapies used to treat refractory celiac disease.

either way I had pizza for dinner. 50/50 tomorrow is a rough day at work!

Well, I just hope the immunosuppressent you are taking doesn't sabotage your biopsy results.

I have been gluten free for many years now and have lost all tolerance to it. If I were to eat a pizza now I would be experiencing intractable vomiting for several hours with excruciating gut cramps followed by several hours of diarrhea.

[Flyttfag3l]

You bring up a good point about the biopsy. My rheumatologist and I initially decided to keep me on it because it has helped some of the severity of my Sjogren’s symptoms, and a sudden change might be just too much for me right now… but he gave me the go ahead to stop altogether or skip weeks. Something to think about I guess. 
 

your symptoms sound a lot like my mom now that she’s been gluten-free for years. It sounds terrible! Here’s hoping it never happens again and all of your meals are safe :). 

[trents]

The Mayo Clinic guidelines for the pre-biopsy gluten challenge is 2 weeks of eating at least two slices of wheat bread daily (or the equivalent). However, it's much longer for the antibody test, 6-8 weeks. I mention that because apparently the physical damage shows up more quickly than does the inflammatory response that is detected by the antibody tests. My point being that if you were inclined to go off the immuosupressent med you might try to time it such that it was out of your system about two weeks before the biopsy.