Gluten Challenge Confusion

[blackbetty]

Hi all

I'll give a little back ground...Like many people's stories here, I've been having life long issues that peaked last year (I'm 36) with a very painful blister rash on my face and scalp, digestive problems, brain fog...and all the rest of it. After 9 months of it all, a GP asked about celiacs, I'd never heard of it but looked into it, thought it made sense so went gluten free and then got referred for a blood test for it which, unsurprisingly, came back negative. In the 2 years prior to this, my diet was gluten light- other than treats and holidays when I would go all out and ALWAYS got very sick, which I thought was food poisoning.

So, I discounted the blood test results as I hadn't ate enough gluten.  After the negative blood test, my GP was a dead end so I decided to try a strictly gluten-free diet as an experiment and it was the only thing that cleared up my skin and about 90% of my other symptoms. I continued to get some occasional random extreme bloating with extreme fatigue- about once a week or 2 weeks. I then went back to my GP and explained this and was referred to Gastro- 7 months later I saw the consultant and was referred for testing- stool, bloods and endoscopy as well as a lactose test. He said he was testing for crohns (I have family history) and celiacs.

It's now 6 weeks before my endoscopy so I started my gluten challenge last night. The build up to this has been immense. It's almost been a year now of thinking I may have celics and 10 months of gluten-free. I've been keeping a list of all the foods I've wanted to try, preparing my work for possible sick leave, telling my husband and friends what to expect and I'd even preprepared a 'lounge wear' wardrobe for my sick brain fogged self just in case I was struggling that bad.

Last night it all started, I had a pizza and beer and a yum yum (like a doughnut). Oh wow, they were amazing and certainly better than I'd remembered, I actually felt a little emotional eating it! (so sorry to all the gluten-free-ers reading!!) I was then waiting on the after effects and totally expected to be bed bound today. BUT other than a racing heart rate last night and maybe feeling a little tired today, I FEEL FINE!!! Now, I don't want to have celiac disease but this is just confusing me! It's now been about 17 hours and surely I'd be feeling ill by now?!!

Can anyone cast any light on what might be happening?

[ravenwoodglass]

It can take some time for a reaction to happen. When I did my challenge I was fine for a couple days and then on day 3 it hit, hard.

I hope you don't react too strongly and that you can get a definate answer from testing when the challenge is over.

[Bajansun]

Sorry to hear of your challenge. I think it may take several days before a reaction sets in, if it does at all. Gluten intolerance is a challenging issue and one which never goes away. I take a Dapsone tablet (100mg) once a week to counteract any effects I may get from any gluten that sneaks in even though I try to be as gluten-free as possible. In Barbados it is not easy to be totally gluten-free.

I also experience fuzzy headed issues, poor concentration and also mood swings which I am finding more difficult to amnage. I hav been able to manage the digestion issues to some extrent so that I do not experience the bloating, gas, discomfort (and embarrasment) as often.
Life is not easy but believe me, you can deal with it and still enjoy a good quality of life. You will need the support and understanding of your husband/wife/partner and sometimes that will take a lot of patience on their part.

[Fungi]

Hello, I can understand your situation because just the other day my doctor said to go on a gluten free diet for the months and then try the gluten challenge and eat only one meal with gluten and see how I react. I'm staying that, but I don't know if it's necessary to take the gluten challenge. If you already know that you feel horrible after eating gluten, then why break you diet and eat one meal, which may make you even more confused? I'm just trying to understand the logic behind this.

I think that everyone reaction comes at different times, and with different symptoms. You just have to patient with your body, and let it show you signals/signs. I'm sorry that you have to go through this confusion.

Good luck!

[blackbetty]

well I can safely say I'm no longer feeling fine!! I've had a very different reaction to what expected though. It feels like my digestion is really slowing down and I'm slowly getting some stabbing pains here and there. There has been no bloating though which I am very surprised about. I'd actually say my stomach looks quite flat. I expected my digestive symptoms to be intense but it's been very gradual.

The most striking symptom has been the fatigue. About an hour after eating anything with gluten, I'm completely floored- it's really like I've taken drugs. I can't think clearly and if I'm talking I can't find the words I want to say.This has been a really intense symptom and has prevented me from doing anything. Very weird. 

I'm on day 5 now so we'll see how it goes. 

 

Fungi- the reason I'm doing a gluten challenge is because in order to test for coeliac disease, a person needs to eat gluten for quite some time (around 6 weeks). The way they test for coeliac is to measure the signs of the damage, this can be done by a blood test or looking at the parts of the stomach (e.g using an endoscopy). I already pretty much knew I had problems with gluten after eliminating it from my diet and having a massive improvement in my symptoms but I just didn't know if I have coelicas disease. 

[squirmingitch]

Hang in there blackbetty. Only 5 weeks & 2 days to go. Are you in the US? Do you know the Chicago Celiac Disease Center's recommendations for a gluten challenge? For the endoscopy they recommend 2 weeks of gluten eating not 6. Personally, if it were me, I would probably eat gluten for 4 weeks just to hedge my bets but I wonder if you want to go for 6 weeks??????

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[Shelbz]

Hi blackbetty! 

 

I'm actually experiencing something similar. I've been off gluten for about two years after finding out on my own that I might have developed a gluten intolerance and normally am very sensitive to even the slightest bit of it. My main symptoms are fatigue, bloating, diarrhea, headaches and sharp stomach pains. I just recently started my gluten challenge on 7/15 to get tested in 3 months for celiac and so far I am just left pretty confused. I thought my symptoms would be worse than usual but so far it's been the opposite. It's been about a week and a half now and so far I do get sharp pains but only very slightly and it'll only hit me for a brief moment at random times throughout day followed by a little bit of constipation. The biggest symptom I've been having is just the fatigue. I feel like I've been getting plenty of sleep but feel like I've just been waking up tired each morning and can barely concentrate or stay awake by the afternoon. I guess only time will tell but right now I'm just feeling so confused because I was so sure gluten was the culprit but now I just have no idea. I'm curious to see how the rest of your challenge goes!

[cyclinglady]

Hi blackbetty! 

 

I'm actually experiencing something similar. I've been off gluten for about two years after finding out on my own that I might have developed a gluten intolerance and normally am very sensitive to even the slightest bit of it. My main symptoms are fatigue, bloating, diarrhea, headaches and sharp stomach pains. I just recently started my gluten challenge on 7/15 to get tested in 3 months for celiac and so far I am just left pretty confused. I thought my symptoms would be worse than usual but so far it's been the opposite. It's been about a week and a half now and so far I do get sharp pains but only very slightly and it'll only hit me for a brief moment at random times throughout day followed by a little bit of constipation. The biggest symptom I've been having is just the fatigue. I feel like I've been getting plenty of sleep but feel like I've just been waking up tired each morning and can barely concentrate or stay awake by the afternoon. I guess only time will tell but right now I'm just feeling so confused because I was so sure gluten was the culprit but now I just have no idea. I'm curious to see how the rest of your challenge goes!

You know, anemia was my only symptom at the time of my diagnosis (I was pretty fatigued from that). I already had a genetic anemia so the iron-defiency anemia was always over looked and blamed on my being a menstrating woman. My iron levels would improve with iron supplements too. I was shocked that my GI during my routine colonoscopy (Yep, I am over 50) consult suggested that I be tested for celiac disease. What? Me? My husband has that -- not me? I only get tummy aches when I consume eggs and dairy. Avoid those and I was healthy!

He tested anyway and I had celiac disease. So, you do not have to have severe intestinal symptoms in order to have celiac disease! Plus, celiac disease symptom can wax and wane. After my blood test, I waited to seven weeks for my endo/colonoscopy due to work conflicts. I ate literally a loaf of bread a day plus ally my favortie gluten-containing foods. By the end of seven weeks, I had stomach pinching and bloating. I do not recommend going over-board on the gluten during your challenge!

I hope your gluten challenge goes well!

[blackbetty]

Thanks for the replies. Shelbz- it sounds like we're having very similar experiences! You're doing it for 3 months though! Wow! Why so long? I'm doing it 6 weeks and that feels LONG. Poor you! I'm trying to find a way to tolerate my symptoms so I can still do things and go to work but if I eat it in the later part of the day, my sleep is really bad and I'm exhausted the following day and if I eat at the start of the day, I'm just a total zombie all day. I managed to get to work today but only by eating all my gluten at the start of the day yesterday and not having anything until afternoon today- I basically got a good sleep and a good morning but suspect I'll pay for it tonight/tomorrow. Have you found anything that helps?

 

Squirmingitch- I was advised by the consultant 4 weeks but in the NICE guidelines (I'm in the UK and this is NHS standards guidelines) they recommend 6 weeks. I wanted to reduce any chance of getting a false negative so went for the longest time recommended. I'd also been gluten free for 10 months and gluten light for about 2 years+ so wanted to make sure I gave my body long enough time to get damaged (how awful does that sound?!) 

 

Only 3 weeks 6 days to go! 

[squirmingitch]

I can surely understand wanting to reduce your chances of a false negative. Hang in there! 

[roomorganizing]

blackbetty and Shelbz, don't be fooled by your current symptoms, or lack of. Remember, we now know that most gluten symptoms are NOT digestive in nature. The classic celiac symptoms are diarrhea and/or constipation, bloating, cramping/pain, etc -- but the list of over 300 celiac symptoms suggests that the classic symptoms are no longer the major indicators of this disease or intolerance. Personally, at the first and second levels of my family, there are 6 of us with diagnosed celiac disease, 2 who are sure but have been gluten free too long to test positive, 2 who are gluten sensitive, and several in denial/not interested. Only my diagnosed niece reacts to gluten with stomach pain, while one of my "uninterested" nephews has had stomach issues all his life. For the rest of us, the symptoms range from anemia, extreme fatigue, DH, hypothyroid, to severe brain fog, depression, acne, short stature (now remedied), delayed puberty, and others. I went gluten-free when we found out about our son and decided to do a gluten challenge last year. Prior to being gluten free, I had dealt with mild depression and severe fatigue + brain fog most of my adult life, and was surprised that those symptoms were milder than I expected when I reintroduced gluten. However, the lack of energy and brain fog were so frustrating that I could only tolerate 6 weeks of the challenge. My blood tests were within normal ranges at that point, but with both genetic markers along with a slew of symptoms and a huge family history, I have no doubt that I have celiac disease and choose to stay gluten free. I WISH I had stuck with the challenge!

 

The two of you look really young, so my personal opinion is that it's very important to get a diagnosis. Potential issues that could arise as you get older or with any future children could point back to your diagnosis and give docs a better foothold on your situation. On average, it takes 11 years for someone with celiac disease to be properly diagnosed, so please don't mess an opportunity! Hang in there and don't be thrown off by your mild reactions so far. Like cyclinglady indicated, you never know what's lurking under the surface....even when you don't feel sick.

[blackbetty]

Roomorganizing Thanks for your input that's really helpful. I think even the medics get overly focused on digestive symptoms being the key features! One of the GPs I saw while trying to get to the bottom of what was wrong with me told me that coeliacs would explain my gastro problems but not all the health related issues I'd had as that seemed to be immune system related (which was when they suggested I might have HIV!). I hope there is research being conducted so that this information will filter through to the medics. 

I'm 37 (not sure if that's considered young! hope so ) and don't have a family but would like to and was one of the reasons I decided to do the challenge. I also have a strong family history of problems- my dad in particular. He's been diagnosed with crohns but has never tried to go gluten free. He never would- I think he falls in the uninterested camp! I do feel it's best to know but also understand why people chose not to do the challenge if they've been gluten free for a while. Hopefully it's just short term pain for long term gain! 

[Shelbz]

You guys are so helpful! Hope your still doing alright Betty! Not sure why my doctor says 3 months in necessary but I'm kind of in the same boat and just want to power through it as best I can so that I can get the most accurate result possible. Tummy aches are increasing this week only slightly and I've started to get some weird reflux/heart burn that I've never had before but over all not too bad so far.

[blackbetty]

Shelbz- are you getting blood tests? I read recently that if you're gluten free, you need to eat gluten for 3 months for the blood test- so maybe that's why? 

I've also been getting a pain that I thought could be heart burn. I hadn't had it before so wasn't too sure what it was. I've been describing it as feeling like my insides are corroding! It's worse at night- particularly if I eat something with gluten close to bed time. It's been really bad a few nights and I've felt like I was going to be sick. 

I've also been really unsettled at night when I'm sleeping. I'm waking up feeling very scared, like something's going to happen but I'm still half asleep so really confused. I've found that keeping my gluten eating to the first half of the day really helps with my sleep but as fatigue is still my main symptom, it leaves me unable to do any of my daily activities!! So I can either have energy during the day OR have a restful sleep 

I got my appointment today for the endoscopy- 3 weeks today- I'm half way!