Feeling worse on second gluten-free diet

[LucyB]

Hi all, my gluten-sensitivity story has been quite the adventure, but I'll try my best to keep it short.

 

5 years ago, I got physically exhausted and weeks afterwards I developed IBS symptoms. When I started to feel a little better, I decided to go on the contraceptive pill for the first time, as my periods were also getting more painful. Months passed and my IBS symptoms barely improved. I saw many doctors, had an endoscopy, barium meal xray, blood tests etc. The only thing that showed up was my stomach was slightly inflamed. I then saw a dietitian and did the FODMAP diet, reintroducing foods one by one. I remember I felt worse when I was on this diet, particularly in the last few weeks. When I reintroduced gluten, I remember feeling a little more bloated and gassy that usual, but it didn't seem THAT bad. Everything else felt normal. I decided to give up caring, and my IBS symptoms actually improved. Unfortunately, I had began to develop migraines with auras, a faster pulse (BP still ok) and would constantly blush at anything, even just talking normally to someone. I contributed these to the contraceptive pill, since I'd never had the symptoms prior, and decided to stop it. That was 2 years ago.

 

When I stopped taking it, work was demanding and I was under a lot of stress. I had a breakdown/ burnt-out; I felt my entire body change. IBS had ceased, and instead I had anxiety, brain fog and could no longer deal with stress. My doctors checked my hormones and thyroid and, again, everything was fine. They wanted to put me on medication for my migraines as they were still persisting 9 months after I went off the pill, but I refused as I wanted to get to the route of the problem, not cover it up with meds.

 

Slowly, the migraines became less frequent but my periods were still not typical: they weren't as heavy, painful or regular, and were paler than before. My anxiety was persistent, my mood and energy was low, I'd sometimes feel depressed, and my libido nearly non-existent. My concentration was at an all time low; days where I'd work really hard, doing maths, paying attention etc would give me a headache and mind melt that would last days - I felt like a vegetable and didn't want to talk to anyone. My anxiety became more about social and health issues. Sometimes, it would get so bad I would have to stop watching TV shows where people were arguing. I felt like I was losing control. My nerves would get on edge and I'd develop lasting pain in my neck and shoulders. This was well over a year after coming off the pill, so surely my hormones would have sorted themselves by that point?

 

Then, my Mum got diagnosed with Celiac disease. She'd just gone through the menopause when it happened. I'd been tested for celiac years before, but it was negative. I decided to test myself again and yep, it was negative.

 

More months passed, trying to treat my anxiety and depression with therapy and CBT, and I felt it helped a little, but my body still felt out of my control. Last February, I thought to try a gluten-free diet again just to see what would happen. After the first week, I had about 4-5 days of fatigue and sleepiness, but then I felt amazing. There was a stressful situation involving my flat flooding, but I kept in control and didn't suffer terrible symptoms for days after. Work was also getting stressful, but I coped great. I had more energy and wanted to exercise, it was great! A few days later, I went out for dinner and believe I ate some gluten. I decided to come off the diet and see how I'd react. I ate a biscuit and felt brain fog return 30mins or so later. That night, my gut hurt so so bad and I didn't sleep. This reaction scared me as it proved that gluten was probably the cause of my IBS and mental issues after all.

 

My Mum thought it was worthwhile having another Celiac test, since my reaction seemed so obvious, but to do that I needed to eat gluten for another 6 weeks. I didn't enjoy it, but eventually the gut pain disappeared and my anxiety returned. The final Celiac test showed negative, so I decided to start a real gluten-free diet for at least 6 months and see if I could "cure" myself. This time, however, I felt good for the first few days, then crazy fatigued ever since I drank some wine at a picnic with friends (they also brought a load of sugary gluten-free snacks so I wouldn't feel left out). I've barely had the strength to walk since then (5 weeks ago), though it let up for 1 week where I just felt crazy depressed instead. The fatigue swiftly came back with another glass of wine, and 2 days later, some strong heart palpitations. It also seems worse after I eat or have a bowel movement.

 

A week after the heart palps, I started my period (which was late by 1 week). The morning after this, I woke up and urgently needed a BM. I was shaking and felt like I was going to pass out. I went to the emergency room as my pulse was so high (over 100 resting) and I started to develop chest, shoulder and arm pains. My BP was fine though, and I had blood tests for full blood count, blood sugar, fatty acids, kidney, liver, iron level, sodium, potassium, calcium and thyroid. All normal. They also ran an ultra sound on my heart, did an xray and took a urine sample. No issues anywhere. My GP said I'm just having a tough time at the moment and thinks I'm stressed, but I really don't feel stressed about anything. I AM slowly starting to feel depressed as I am cooped up inside, not working and lying down most of the day, but the only stress I can imagine is the change in diet, or my mild hay-fever. I've quit alcohol and caffeine now and have started to reduce my intake of sugar. I also quit lactose a week ago as I've had some diarrhea which makes the fatigue/ pulse worse.

 

I'm at my wits end with it all to be honest and don't know what to do. I'm definitely feeling physically worse on the gluten-free diet this time around, but feel like I should stick with it and just get through this. If I return to eating gluten, I'm sure I will feel the anxiety, brain fog, lack of concentration and gut pain come flooding back. As for my hormones and menstrual cycle, I really feel there's a link to gluten-sensitivity. Celiac disease seems to come on more often during menopause, so I wonder if taking the contraceptive pill has created some kind of similar feeling, even though I have gluten sensitivity, not Celiac Disease?

 

I just want to get well and don't know what to do anymore.

[GFinDC]

Hi Lucy,

You certainly are having a rough time of it.  I wonder if the docs checked you vitamin levels?  Vitamin B and D?  Celiac causes gut damage and we can't absorb nutrients correctly when that happens.  The gut will heal but it may take some time.  I think you are on the right track staying off gluten.  Some people just don't pass the antibodie tests but they still have celiac disease.  Some times doctors don't even do the full celiac panel.  You might be IGA deficient for instance and not make those antibodies.  Anyway, you don't need a doctors permission to eat gluten-free.

I think the best way to start the gluten-free diet is to stick with whole foods that you cook yourself at home.  No restaurants or processed foods.  Meat, veggies, nuts, eggs and some fruit should be your main diet.  Many people have to give up dairy for a while also as the gut damage makes impossible to digest milk properly.

The newbie101 sticky thread had some info that might help you also.  It takes time for us to heal enough to absorb nutrients properly also sometimes people get shots for B vitamins.  I think being off caffeine is a good idea too.  You might try some selenium or brazil nuts.

Welcome to the forum also!

[LucyB]

Thank you GFinDC! I asked my GP about checking my Vit B but he seriously doubts it's that. I'm not so convinced, but I continue to take a B complex, omega 3 fish oil and calcium/ magnesium anyway.

[Jmg]

On 6/6/2016 at 2:09 PM, LucyB said:

I'm at my wits end with it all to be honest and don't know what to do. I'm definitely feeling physically worse on the gluten-free diet this time around, but feel like I should stick with it and just get through this. If I return to eating gluten, I'm sure I will feel the anxiety, brain fog, lack of concentration and gut pain come flooding back...

 

...I just want to get well and don't know what to do anymore.

Hi Lucy,

I know this reply is a little late but having read your account I wanted to respond. I hadn't noticed it before down here in this section! Like you I tested negative for celiac, but like you I have very definite reactions to gluten, brain fog, shakes, etc etc. I had convinced myself I was diabetic due to the mad hypoglycemic reactions to sugar but again tested negative. I also felt worse on the gluten-free diet second time around, the first time was, again like you, akin to a revelation! I didn't realise I could feel that well, the second time, after the challenge, not so much. It wasn't as bad as you're experiencing however. 

I don't think you should even think about adding gluten, you clearly have a problem with it. Between your family history and your previous reaction you sound as if you have the evidence you need to exclude it permanently. As I understand it there's a spectrum of people with gluten issues and you and I perhaps just inhabit a slightly different area, based on how our bodies are reacting. It might not qualify as Celiac but it doesn't make it any less real. So the alternative, once you've established beyond doubt there's no gluten getting in, would be to look to see if there's anything else causing issues. Dairy is the number one contender for me after gluten, but it sounds like you've eliminated that?

If you'd tested positive you'd now be getting additional support and the comfort of some certainty as to what caused the problem.  My suggestion would be to proceed as if the diagnosis was positive and have a 6 month healing the gut drive. So eating fresh wholefoods as GFinDC says above, limiting or avoiding completely gluten-free processed foods and getting probiotics, bone broth, vitamin supplements etc etc. to give your body the best chance to heal. Keep a food diary, which will help you match any physical symptoms to diet and also give you a sense of control over what you're taking in. 

Best of luck, I've found this a very supportive and informative site, hope you do too

 

Matt