Unexpected Symptoms During Gluten Challenge

[Kelsie]

Hi All,

Week one of my gluten challenge and I'm having some symptoms I did not expect. Maybe it's a coincidence, but I wanted to run by the group here:

- terrible sleeps. Can't stay asleep, wake up like 4 time night, can't fall back asleep. Hot, tossing turning.

- rheumatoid arthritis is flaring, I have been in remission for 2 years, with NO RA symptoms, so this is very worrisome for.

- bruising very easily - I do have unexplained anemia, but the bruising seems to be worse lately

- headaches are increasing- I can see this is going to become a daily thing

Also what is the general opinion of how long you should be doing a gluten challenge for accurate text results?

My gastroscopy is June 12, so I still have a way to go. My current GI think celiac is unlikely. So I saw my RA doc yesterday and they will line up a second opinion specialist if needed.

[IrishHeart]

I am the kind of person who believes there are no coincidences, hon.

 

Your symptoms speak volumes. Sorry you are in increased pain. 

 

What did your blood test say? (I may have missed your history on other posts)

 

If your blood panel is positive and you have a positive celiac gene test, some docs will skip the biopsy if you cannot take it anymore

and say it's celiac.  If this GI doctor is too dim to see what is right before his eyes, maybe you could get a new one. IMHO

[Kelsie]

Thanks IrishHeart, my blood work was negative.  But I was also relatively gluten free at the time (not fully cause I thought I just had a wheat sensitivity), and just went through 8 weeks for chronic diarrhea (like 15 times a day) and only able to eat rice, boiled chicken, steam veg, and oatmeal.  I was on short term disability for 8 weeks....and basically slept or was in the bathroom.  I lost about 20 lbs in 2 months.  It just came on very suddenly, but I had a history ongoing issues.

 

I already had a colonoscopy done, and there was nothing abnormal in that.

 

When I went back for my follow up with the GI, I really thought he was going to dismiss me and say its IBS.  He did say "this sounds like IBS", but he did book me for a gastroscopy to be sure.  So he's not totally dismissive.

I had another appt. with my RA docs yesterday, and they are awesome, so they have already said we will get to the bottom of this if this GI doc doesn't find anything.  So that is a relief.

 

I have had problems with wheat (maybe Gluten?) since 2008, also when I developed the cold allergy (total pain, I can't even go swimming), unexplained anemia for 10+ years, heacheaches, migraines, bloating, cramping...the list goes on.  I finally hit the point now where I need a diagnosis and need every option fully explored.  Especially after being so sick in March and April, I just need to get to the bottom of this.

 

I know they the avg. celiac patient takes 10 years to get diagnosed, is that even with colonoscopies and endoscopies....docs still have a hard time confirming damage?  Feeling a little deflated at this point....seems like this will be a long road

[BlessedMommy]

Please, please, please be careful with the headaches! I would suggest that you figure out a way to get a DX and end this gluten challenge. Seems pretty obvious that you have an issue with gluten!

 

My gluten challenge (in hindsight I overdid the gluten) resulted in daily headaches. At first I shrugged them off. I figured, how dangerous could a headache be anyway? On day 10 of the gluten challenge, I developed neurological symptoms. My right side went numb and I had speech difficulties. I went to the ER and the doctors ran a CT scan. It came back totally normal. They diagnosed it as a TIA.

 

That day, I decided that I was done with gluten for good. Whether celiac tests came back positive, negative, or inconclusive wouldn't affect my decision. There was no way that I could ever, in good conscience, purposefully eat gluten again. As it turns out, the celiac doctor was booked up for weeks. I ended up cancelling my appointment. I figured that by the time I was able to see her, the gluten would be out of my system anyway, plus I only did a 10 day challenge to begin with. 

 

After that day in the hospital, I began eating gluten-free again immediately. It took me days to feel totally normal but my headaches started getting better immediately after laying off the gluten. I visited my family doctor and he had no desire to run any follow up exploratory tests. He told me that he believed that my TIA was gluten triggered and that staying away from the gluten was the best thing that I could do.

 

Most friends and family agree that with that type of medical history, I really don't need a celiac diagnosis. The writing is on the wall. But on the other hand, who needs permission from doctors to do what they know is right for their body?

The bad news is that I don't have a diagnosis. The good news is that I'm healthy.I found out about this early enough to prevent most permanent health problems. I'm 32 and in pretty good shape overall! I have been gluten free since shortly before I turned 28.

 

I feel thankful to have found out that I couldn't tolerate gluten before I did permanent damage to my body. 

 

Best of luck to you in whatever way you decide!

[IrishHeart]

Thanks IrishHeart, my blood work was negative.  But I was also relatively gluten free at the time (not fully cause I thought I just had a wheat sensitivity), and just went through 8 weeks for chronic diarrhea (like 15 times a day) and only able to eat rice, boiled chicken, steam veg, and oatmeal.  I was on short term disability for 8 weeks....and basically slept or was in the bathroom.  I lost about 20 lbs in 2 months.  It just came on very suddenly, but I had a history ongoing issues.

 

I already had a colonoscopy done, and there was nothing abnormal in that.

 

When I went back for my follow up with the GI, I really thought he was going to dismiss me and say its IBS.  He did say "this sounds like IBS", but he did book me for a gastroscopy to be sure.  So he's not totally dismissive.

I had another appt. with my RA docs yesterday, and they are awesome, so they have already said we will get to the bottom of this if this GI doc doesn't find anything.  So that is a relief.

 

I have had problems with wheat (maybe Gluten?) since 2008, also when I developed the cold allergy (total pain, I can't even go swimming), unexplained anemia for 10+ years, heacheaches, migraines, bloating, cramping...the list goes on.  I finally hit the point now where I need a diagnosis and need every option fully explored.  Especially after being so sick in March and April, I just need to get to the bottom of this.

 

I know they the avg. celiac patient takes 10 years to get diagnosed, is that even with colonoscopies and endoscopies....docs still have a hard time confirming damage?  Feeling a little deflated at this point....seems like this will be a long road

It does not mean it will take that long for you to get answers--it just means that statistically, that has been the norm.

Things have changed a lot in the last few years and the diagnostic protocol has been the key reason for why the number of celiacs has risen.

 

 

The symptoms you initially describe could result from any number of things: lactose intolerance, bacterial infection, inflammatory bowel diseases, lupus, and a whole host of other reasons, so they have use all the ways they know to find out what's going on..

 

The resurgence of symptoms on the gluten challenge is a factor, though. IMO

 

The negative panel is not always an indicator that you do not have intestinal damage going on. Many of us were negative on the blood work

and still had positive biopsies. See what I mean? it's tricky.

 

Why didn't they just run the celiac gene test? it would help rule things out.

 

I am sorry you are having so much difficulty, but it seems as if the RA doctors are willing to help you. That's a good thing!

Don't be discouraged. It sounds as if you have medical people on your side!

[Kelsie]

Thanks Ruth! You've given me something to think about for sure!!

[BlessedMommy]

I hope that you are able to get some answers

 

I hope that someday the in vitro gliadin challenge will become the standard of care for celiac testing or that it at least will become widely available and used for the more difficult cases. One thing's for sure, if they do studies on it and need guinea pigs, I'll be one of the first to volunteer.

 

https://www.celiac.com/articles/23074/1/In-Vitro-Gliadin-Challenge-Offers-Accurate-Diagnosis-of-Difficult-Celiac-Disease-Cases/Page1.html