Gluten challenge worries

[out-of-step]

So, my doctor has put me on a 2 week gluten challenge for a celiac test because of continued gut problems, but I'm a little concerned about how it's going. Also, I'm worried that it will all be for nothing, as I've been pretty much gluten free (aside from the occasional cheat) for a few years now. They think that I might be celiac, although I have just been treating myself as gluten intolerant since finding out I felt better cutting gluten from my diet. I'm on day 3 and although day 1 and 2 were horrendous, the symptoms do seem to have become more tolerable - which is kind of making me even doubt my own previous convictions on my sensitivity. Is this normal? I am getting more neurological symptoms than digestive ones, when previously I always had a lot of pain in my guts when I ate gluten, as well as bloating, acid reflux and all that fun stuff.

I'm also surprisingly managing to eat a lot more than normal, even though gluten has generally made me lose my appetite and have gastroparesis-like symptoms. I don't really know why my hunger levels are so crazy, and I'm worried that I'm going to put on a load of extra weight, only to get a negative celiac result and feel like I've wasted my time. I was wondering if anyone could relate to any of this or would be able to explain it? I've been told to eat wheat for every meal, or at least 3 times a day, so that it's the equivalent of 4-6 slices of bread...

I'm not sure whether this is going to be worth it, but also confused as to why my symptoms are fluctuating so much. Yesterday I felt drugged and headachey and today I just feel lethargic and bit depressed but nothing much more. I seem to be getting weird pressure changes in my ears and head and my lymph nodes are swollen but I'm not sure if that's related. I'm just surprised by the lack of pain...if anything I feel quite numb.

Anyway, any light on this all would be much appreciated! I've rambled somewhat. 

 

Edited May 2, 2019 by out_of_step

[cyclinglady]

Your doctor is wrong.  You just need 1 to 2 slices of gluten-containing bread a day (or equivalent) during a gluten challenge.  But maybe he wants to be extra sure.  If you can tolerate it, go for it!  

Celiac disease is like a chameleon.  Symptoms are always changing.  You could be hungry because your small intestine could be under attack and is starting to not absorb nutrients.  Sounds like a good explanation?  Seriously, this can be true.  This is why some celiacs are overweight at diagnosis.  Not all celiacs are short and skinny!  Celiac disease is also systemic. It can affect many, many  different parts of your body including neurological.  

My advice?   Skip all that bread and consume some yummy foods that you might not be able to eat again.  I did that the seven weeks up to my endoscopy.  I did eat a loaf of sourdough a day.  Then added every favorite goodie.  Even old junk food items.  I would eat one and give the rest away to my neighbors.  I would stop at my favorite restaurants to get desserts to go or eat my favorite savory items.  

Indulge!  

By the date of my endoscopy, I knew that  gluten was  making me sick and my only obvious symptom was anemia when I had the blood panel done.  

 

Edited May 2, 2019 by cyclinglady

[out-of-step]

Thanks for your reply Cycling Lady  I think my doctor just wanted to make sure that the results were likely to be more accurate, given the short time frame, but thanks for clarifying. I guess what I'm experiencing is kinda expected then... I just wish that there was another way to find out! I'm probably going to try and make a bit of a bucket list, just in case this is the last time I get to eat certain things, although I'm pretty used to the gluten free alternatives now funnily enough. I'm quite happy to be getting to eat wholegrain cereal again, seeing as that is quite hard to replicate gluten free. Thanks for sharing your experience anyway. I'm glad you were able to get a diagnosis

[cyclinglady]

Wait a minute!  Is this challenge for an endoscopy?  If not, you need to be on gluten for six to 12 weeks prior to a blood panel.  Two weeks seems to be sufficient for them to see damage to the small intestine, but it can take weeks to build up antibodies in the bloodstream.  

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/

I am sorry that I misread your post.  I assumed you were working with a GI already.  Two weeks for the blood test is most likely too short of a time.  Your risk for negative results are high.  You could be stuck in diagnostic Limboland.  Please share my links with your primary care physician.  

 

[out-of-step]

2 hours ago, cyclinglady said:

Wait a minute!  Is this challenge for an endoscopy?  If not, you need to be on gluten for six to 12 weeks prior to a blood panel.  Two weeks seems to be sufficient for them to see damage to the small intestine, but it can take weeks to build up antibodies in the bloodstream.  

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

https://www.beyondceliac.org/celiac-disease/Testing-and-Diagnosis/The-Gluten-Challenge/1510/

I am sorry that I misread your post.  I assumed you were working with a GI already.  Two weeks for the blood test is most likely too short of a time.  Your risk for negative results are high.  You could be stuck in diagnostic Limboland.  Please share my links with your primary care physician.  

 

Hi Cycling Lady,

It's not for an endoscopy, no, it's for a blood test... I feared it might be optimistically short. Thanks for the links, I will discuss them with my doctor when I see them.  Since I have an appointment two weeks after the blood test to discuss the outcome, I'm wondering if perhaps I should try to stay doing the gluten challenge till then? Then I could ask for another blood test to be taken at the 6 week mark... It does seem a long time away but if there's not much chance of an accurate test after 2 weeks then maybe that's what I have to do.

[cyclinglady]

I recently had my kid retested for celiac disease this year.  Because she lives in a gluten free house, I made sure that for three months solid, that she had gluten either in her school lunch or she was eating it at restaurants, friends, or wherever.  Every single day!    Twelve weeks was very conservative, but we needed to know for sure.  The cost of the complete celiac panel was an outrageous $760, but luckily insurance paid a vast majority of it.  The price increased from $450 just four years ago.  What a rip off!  

I would hate to waste money and a potential insurance denial to repeat the test if negative for a two or even four week challenge (without consulting with your insurance and getting it in writing and even then....I would not trust them).  Push for at least six weeks based on what all the celiac centers suggest and not just some crazy lady on the internet. Do a longer challenge if possible.  

 

 

[Awol cast iron stomach]

My 2 week challenge was for both scopes. The endoscope and colonoscopy. While on the challenge the symptoms became progressively worse. I still had my GI symptoms, but the neurological and emotional issues were even more pronounced than before since I had been eating gluten-free for 3 years previously. Although I was not living a strict gluten-free life as my home at that time was not entirely gluten-free. I am concerned I read above that this is just for your blood test panel though. 

A challenge is hard to undertake and I do hope for the days when our researchers have another method. I did the challenge for my children. Also my cousin was already a gold standard diagnosed celiac so it seemed me being diagnosed would likely deduce if it was "our" side of the family/genetics so future relatives would know. 

I initially did plan my goodbye tour to gluten I am still angry to this day that I could not have my last deep dish pizza goodbye meal. TMI- I knew I would be consuming it likely on the toilet and neurologically I had stopped driving by day 6-7 and instead walked to my local bakery to voluntarily gluten myself. I did eat fresh rolls, kolaczki, and I can't remember what else. There were many goodbye foods I just said nope can't drive there so I am just going to the bakery. Thankfully I had a popular bakery nearby.

I would say in general I already knew I had issues, but I was already damaged from cc (my sister's 50th b-day the waitress thought it would be fun to poison the high maintenance gluten-free eater) I learned a lot though. I now have a diagnosis on file, my kids know what to look for, I officially joined the forums here, and learned I was doing it wrong as too many cc events could occur they way I was eating gluten-free before diagnosis.

I now never eat out, I have problems with many gluten-free processed foods, and if I get CC well DH arrives on the scene now which ironically did not show up in my Gluten challenge. So yes the chameleon Cycling lady speaks of has a mind of its own. However the origin of gluten ticking off the immune system stays the same.

Welcome to the forum. I would either do the 12 weeks if you can (I personally could not and my Dr's knew I said I could not) if not see if you can get the Dr to do that endoscopy (and for that matter in my opinion if insurance allows do both scopes at once)

Is it worth it? Getting glutened stinks regardless in our situation if we do it to ourselves or it is done to us whether it is for diagnosis etc.

Should you find out-yes in my opinion=yes. The gluten challenge was just that challenging the recovery was even more challenging, but at this time a challenge is the only option they offer. I hope one day that changes.

Good luck.

 

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[out-of-step]

Sorry I've taken a while to come back to this, I've been feeling pretty awful. I have to admit that I didn't make it past day 5... My throat felt so inflammed it felt like it was closing up and also got very raw and painful. I don't really know what to do now, but I've gone back to being gluten free even though I know I haven't done nearly enough for my blood tests in 3 days time. It's frustrating and I also still feel rough even if I'm not consuming gluten anymore. Thanks for the supportive words but I just couldn't do it

[cyclinglady]

 Have you been tested for wheat allergy (IgE response) or EOE?  

https://apfed.org/about-ead/egids/eoe/

[Ranchers Wife]

Sorry you couldn't stomach the gluten challenge.

 

It is a total bummer that the only way to get an official Celiac diagnosis after you've gone gluten free, is with a gluten challenge.

I understand that there are some GI docs that will do an endoscopy after a two week challenge, and skip the blood antibody testing, for a patient with obvious gluten induced symptoms.

 

My personal opinion is that a gluten challenge for an already gluten free or mostly gluten free Celiac is in general unwise, and doctors should be considering that they should "First, do no harm". 

 

Anyway, if you're having GI problems and you're already "mostly" gluten free... and the gluten challenge is untenable, you can make your diet gluten free to a Celiac standard, and see if that clears up your issues.

Of course, that is not as easy as it sounds, you would do well to take all forms of gluten out of the house entirely, replace all porous kitchen tools, get a new toaster and new condiments, etc.

And don't take risks by eating out, unless it's an entirely gluten free establishment. Don't eat anything that anyone  else prepares for you in their own kitchen. And keep processed foods to almost zero, maybe having some Kind bars for emergencies.

Give the strict, Celiac standard, gluten free diet a two month trial, keep a symptom diary, and you will then have an idea of whether or not you might need to assume a Celiac diet.