Exhausted

[Hawthorn]

I have an appointment with gastro specialist on 1st of july.

i started eating gluten again on 1st june. I would guess I am looking at at least another month before any tests are performed, since the appointment with specialist is just an initial appointment.

so in the last 16 days, I have developed bad breath, an itchy patch on my chest, extreme tiredness, depression, my joints and muscles have this flu like ache. My throat is sore, I'm bad tempered, have some degree of suicidal thoughts, anxiety is getting high again, sleeping for anything more than an hour at a time is tough, stomach is hugely bloated, heartburn, swinging between not being able to use the bathroom and going ten times a day (but not loose stool) I'm horribly thirsty, and I just cannot be bothered to do anything. I just want to curl up and sleep constantly. Also muscle tics, my ears keep feeling blocked, mucousy, chesty, dizzy spells, and a weird sort of burning/tingling on my cheeks every so often. Noise tolerance is poor,and concentration just totally went out of the window. I feel like I'm sitting outside of my own body and watching the world go by...and none of it really matters.

I just really don't know if I should continue with the gluten with these symptoms for a diagnosis....is it really worth it?

I just can't reason out in my own head which is the best way to go. It's obvious that gluten is really bad for me. Then I think well i did it for over two weeks, and from previous experience recovery will be slow. I don't want to waste that two weeks to have nothing to show at the end of it. But then I think how bad am I going to feel by the time the tests come around. I feel kind of stuck between a rock and a hard place...

[Meg123]

I can't tell you what to do regarding going to a diagnosis, since you probably already know about all the chances of the false negatives etc. It's a gamble isnt it.... only you know how important it is for you. It was important to me to try. I know I'd always have wondered. Sorry I'm not much help to you, but I just wanted you to know that reading your post gave me hope.

I could have written your post word for word, except the warm cheek thing, plus I have increasingly sore knees and stiff joints etc. right down to the increasing suicidal thoughts!!!

You gave me hope, because it made me remember that I didn't feel like this before, that before this challenge, I felt pretty good except for my fatigue, and fogginess (I was still gluten light).

I have been doing the challenge for about 8 weeks now, and I'd forgotten how bad, depression, anxiety etc I'd become, and the aches and pains. I had started to let it all become part of me.

I look forward to feeling better soon.

If you do decide to go ahead with the challenge, try to remember what you were like 16 days ago, and don't lose yourself the way I have. It's hard to be clear when everything is so foggy etc...

If you dont' really need the diagnosis then, I would just go gluten free again.

[Hawthorn]

Thanks Meg

my reasons for wanting diagnosis - the family thing. I have four children, and though they have zero health problems or reason for me to suspect they may have gluten related problems, I could perhaps get them tested if there were a reason to do so (that reason being me having tested positive for coeliacs)

Also, I have had severe mental health problems in the past few years, some episodes requiring hospitalisation. Although these disappeared almost completely (apart from a few lingering confidence issues) and I was able to completely come off the medication I had since depended on just to make it through the day, I worry that without a diagnosis and solid proof, should I need to be hospitalised again, would they provide gluten free food? I'm not sure why hospitalisation of this type holds so much worry for me since it's not an issue when i am gluten free but always at the back of my mind I think 'what if I get bad again'. I know in my heart that the issues that remained were there from habit, from years of thinking negatively and being unable to see the positive. It's kind of engrained in my behaviour after so long I guess.

I suspect i am lacking in certain vitamins/minerals too. My teeth are weak, my muscles weak, and it would be nice to have some help in sorting out a diet that is going to get me back to a decent level of health, energy and strength. I haven't worked for five years because of health problems and I soooo just want to be able to contribute something again. I'm 36 years old and feel more like a pensioner

[Meg123]

Your reasons are the same as me, I have three children, and would pursue testing for them etc.

I also am around your age and feel like a pensioner. In fact some pensioners are doing a lot better than me. I'm 38 years old.

I also have a history of episodes of depression and anxiety, but with me, it's hard to know if some of it is gluten related, stress related, or postnatal.... the one 6 month period I was gluten free was the most positive and clear headed I ever remember feeling. I remember marvelling at how easy it was to think! Like my mind felt like silk compared to before.

I too think about other's not taking my diagnosis seriously without an actual diagnosis ie hospitals, airlines, family, friends etc.

The other reason I decided to pursue it for to give myself more of a definate reason to stick to the diet strictly. When I did it for the 6 months, I cut out all of the big gluten, but I didn't worry about the cross contimination thing, which may or may not explain why I still had fatigue(?)

[Hawthorn]

ore of a definate reason to stick to the diet strictly. When I did it for the 6 months, I cut out all of the big gluten, but I didn't worry about the cross contimination thing, which may or may not explain why I still had fatigue(?)

I first went gluten free march of last year. I had a bout of shingles, at the same time as the death of my grandmother, who I was very close to. Needless to say I felt really bad - the doctor told me it was a postviral response and would pass on its own eventually. I felt sooo rubbish (was unable to walk back from the bathroom one night, I was so weak) that I decided to do a little research into recovering from 'post viral issues' - an umbrella term if ever I saw one, and came across adrenal fatigue. I checked a lot of those boxes symptom wise and so started looking at what I was eating. As luck would have it, gluten was the first thing I chose to eliminate. A few weeks later..maybe three or so, i don't remember, I ate a wheat breakfast biscuit. My stomach inflated like a balloon, within an hour or so of eating it.

For the next year (coeliacs hadn't entered my head at this point, as for some reason I believed that it was something that you had from birth, with extreme weight loss, failure to thrive etc, and I had actually gained weight) I 'removed' gluten from my diet. I was eating stuff that I thought was probably safe - the occasional takeaway that didn't obviously have wheat in it, didn't consider cross contamination etc (which will have been a huge issue given that at that time I was still baking regularly for my family). That christmas, i went to a party and given some ribbing by my family about my make believe problem I indulged in some good old stick to the ribs pastries, sandwiches, doughnuts etc, party food. Within an hour I was at home and vomiting.

During that time of what was a gluten light time, rather than gluten free, i felt much better. i was still fatigued to a degree, still depressed to a degree and still not right, but I had felt awful mentally for so long that I had forgotten I guess what normal was.

I forget what exactly it was that spurred me into researching more, but that was when coeliacs first entered my thoughts as a possible issue. I clamped down, really clamped down on cc issues, dropped the takeaways and stopped being reckless every now and then eating something that was more or less guaranteed to have gluten in it.

I saw such HUGE improvements after a few weeks that I decided to speak with the doctor. He put me back on gluten for 2 weeks only (hellish two weeks) and the blood test came back negative. I stopped eating gluten, recovered again . In the meantime, I had thrown everything out that may possibly be gluten contaminated, set myself a kitchen area aside, and banned wheat flour from the house. We were scrupulous when preparing food. I felt much better, but still not right. Then, I changed my cosmetics, shampoos, conditioners for things I knew were gluten free for sure since I bugged the manufacturers about it. My dandruff cleared up, a nasty eczema patch on my elbow stopped itching and actually started to heal....i had that permanantly since being about 16 I think. My hair shone, my skin was as clear as it has ever been, and I felt fantastic. I had interest in things again, my periods which had never ever been regular (accepted as normal for me) settled into a 4-5week rhythm,and probably TMI but I could go to the toilet regularly. No constipation, no haemorroids and no sitting there for 30 minutes waiting for something to happen!

I remember seeing my son who is now 8 playing in the garden and generally fooling around and I just laughed hysterically at him. It dawned on me that it had been a long, long time since I had found enjoyment in the simplest of things, that so many of these things had just passed me by in the haze that I was living in without even realising it so much - it had become normal.

I think that is when the thought hit me that if my kids have this issue, I may be dooming them to a similar existence as myself - particularly if they only show the mental symptoms for a long time as I did.

Anyway that was a long, waffly post to get around to saying I only really felt things had clicked when I got rid of the things I didn't even think of as possible contaminants...namely the toiletries. I make my own cleanser and moisturiser now with rose water, glycerin and aloe vera gel and my skin is lovely and soft and not at all irritated, where I'd always struggled with branded face creams.

So yeah, from my experience even the smallest contamination can affect you in a bad way, even if you don't necessarily have the symptoms from an obvious glutening.

[IrishHeart]

I empathize with your dilemma here.

The gluten challenge seems barbaric to me --considering what it does to us.

I was like this for so very long (pre-diagnosis)--had all of your symptoms and a few dozen more and I barely hung on to my sanity. I still do not know HOW I survived it all (a very loving husband and a stubborn nature, I guess? )

I had a NEG celiac panel and the gastro doctor, for some inexplicable reason, did an endoscopy without biopsy. I suffered for many more months based on his thoughts that is wasn't celiac. I went gluten free on my own in November, after researching it for 2 years and being encouraged by my cousin and hubby.

I felt in my heart it was celiac disease and had genetic testing done and -as I suspected--I am a double DQ2 Not coincidentally, since I told my huge family about the genetic factor, 3 more people have been DXed. ...so, with all those symptoms, a drastic 90 lb. weight loss, burning nerve pain from head to toe, severe muscle/joint pain, several vitamin deficiencies and anemia, lost muscle mass, hair loss, teeth problems, HORRID brain fog and cognitive dysfunction, insomnia, anxiety, etc....my PC doctor just said "OMG!!This is celiac for sure." He felt bad he didn't even see it--and his own children have celiac disease!!

But it took me 4 years for that confirmation. 4 years in hell. Looking at my health history, though, the gall bladder disease, multiple miscarriages, "IBS", "fibromyalgia" etc...this thing has been going on for over 25 years.

You are very wise getting a diagnosis NOW, so you can avoid any further decline in health. I'm 54 but my 84 year old mother is in better shape than I am.

Gluten free for over 6 months, my brain is nearly back to normal and my digestive issues nearly resolved. I gained a few lbs. and my muscles are less like noodles. The anxiety has dissipated and the depression??--well, it still lingers from vitamin/seratonin deficiencies and because I have 24/7 pain and frankly, I am a bit pissed off at the lack of help I received from the medical community. In time, that will abate as well.I am in grueling physical therapy to regain muscle strength and get out of chronic pain and I have dozens more symptoms to resolve (like neuropathy and parasthesia, burning mouth, etc), but my doctor says it will take years, possibly. Yet, I feel hopeful because I know that giving up the gluten was the ANSWER.

Should you continue to ingest gluten for the test? That is a dilemma...It's still quite a few weeks away and yes, you have to suffer through them. Hon, this is your decision and only you can make it. I don't blame you one bit for wanting a "real" DIAGNOSIS--for yourself and for your children. I felt validated by the genetic testing, and I did the "I TOLD YOU SO!" Dance a few times ---but if my NEW GI doctor insists I ingest gluten for a biopsy?---there's no way in hell I am going back to feeling like that frantic, sick, burning woman I was.

I suspect he will not ask me to do that, given the many complications that arose because I was undiagnosed for so long. He has a reputation as being a kind and caring celiac specialist.

Hope you get answers for all you are putting yourself through. Seems to me like your symptoms did resolve gluten free!

Unfortunately, false negatives (and mistakes ) happen often and the bottom line is this...if you function better off gluten, then, THAT IS your "diagnosis".

I wish you well.

[Meg123]

thank you so much for taking the time to post all that. That is really very interesting to me, that you went gluten free, but would have still been having all the traces of it that I would have, and although so much better, still not quite right, that's just what I was like. I was ok, as long as I didn't try and do any physical activity etc, but still not quite right.

I think I'm still in the wrong frame of mind. When I see our similarities, ie put on weight, not the big D but even C etc, the mental / emotional stuff etc aches pains.

I think I must still be stuck in the old mindset that a 'proper celiac' is wasting away and with D etc. I know this isn't true, obviously I've read it etc, but since I've been struggling for so long, it's hard to have real hope, of actually getting better.

You've inspired me again this time, to be extra strict. I'm waiting for my results before I start my gluten free diet again. This is because if it's negative, then I'm going back to get some more bloods done, since I expect it will have gone up again in the past four weeks, and then I'll go 100% ( ) gluten free, and then re test in 8 months time. Hopefully this will convince myself properly without any doubts. I may even get the Dr to agree, but the most important thing for me is to properly convince myself how strict I need to be.

Thanks again.

I'll keep a look out to see what you decide to do. It's not easy is it

[IrishHeart]

I think I'm still in the wrong frame of mind. When I see our similarities, ie put on weight, not the big D but even C etc, the mental / emotional stuff etc aches pains.

I think I must still be stuck in the old mindset that a 'proper celiac' is wasting away and with D etc. I know this isn't true, obviously I've read it etc, but since I've been struggling for so long, it's hard to have real hope, of actually getting better.

To Meg and Hawthorn:

I was very overweight for 10 years, had C (the doc told me take more fiber--so what did I do? I ate more whole wheat!! ) and had muscle/joint pain and low moods (he gave me antidepressants) for 10 years BEFORE this triggered for good and I plummeted 90 lbs. without trying...I fell into the thinking "well, I don't have the diarrhea and wasting--like he says is the "celiac profile" (I am sure, my doctor thought this , too as he saw a 200 lb. woman in front of him....)

Atypical symptoms need to be considered... always!

check out this list--it is the most current one detailing celiac disease symptoms:

Open Original Shared Link

I hope you both feel better soon!!