Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Feel A Bit Like I'm In No-man's Land


ShellyB

Recommended Posts

ShellyB Newbie

Hi everyone

This is all very new to me and at the moment I'm not sure what to think. For over 5 months I have been experiencing gastric problems and my diet has been vastly reduced to things which don't cause me problems with acid/burning sensation in my stomach. I have developed several allergies over the last 3 years (including red wine :(

My doc prescribed Lansoprazole but I haven't felt happy at being told I'll just have to take it long term without any further investigations. I don't do meds unless I know there is good reason for them and I instinctively felt this was just masking something which wasn't healing.

I had already mentioned to my Doc that my Aunt is coeliac and my DS had non-coeliac wheat intolerance (was very poorly but thankfully 'outgrew' it apart from a flare up at puberty) and by the way I am of Irish ancestry but he said that although he thought I was likely wheat intolerant I wasn't coeliac........

Feeling cold, tired, finding hairballs in the bath when I wash my hair :o and with pains in my feet, back and pins and needles I went back (yet again) for full bloods and I am (for the second time) anaemic (ferritin). Took the iron pills for a week and my gut flared up again and I was told to stop taking them immediately, and by the way I think we need to get you tested for coeliac and referral to a specialist.

So here I am. I've had the blood tests and go at the end of the week for the results pending referral for an endoscopy. Decided to look into coeliac a little more and cannot believe things I have just accepted as normal for as long as I can remember are not 'normal' at all. The more I read the more I am convinced, even to the time in my 20's I went on a diet which excluded wheat for a week and felt soooo much better. I could kick myself as I remember my son saying to me 'but I thought everyone's tummy hurt like mine did so I never said anything' :(

I don't want to jump to any conclusions hence me feeling like I am in limbo, but if I am coeliac (or even wheat/gluten intolerant) it answers so many questions. I guess I would just be glad to find out the cause of all my problems even though it would carry lifelong implications.

Does anyone else feel like they're in No Man's Land with not yet knowing?

ShellyB


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dbmamaz Explorer

I do . . .i took a sensitivity test (A.L.C.A.T) 2 weeks off gluten and casien and came back mildlly reactive to both, and reactive to several other foods. I took a celiac panel 2 mo off gluten, and it came back negative, which means very little. I went to the allergist and tested positive for wheat, barely, malt, yeast, milk, and 90% of all foods he tested me for.

Well, going off gluten and dairy cleared up most of my intestinal symptoms, got rid of headaches and anxiety and depression. Going off all my reactive foods cleared up more intestinal symptoms as well as some congestoin.

Well, i doubt i'll ever eat gluten again, but . .. i still am not entirely sure what it is . ..

constantly questioning Newbie

Hi Shelly.

Good luck on your tests. I am also in a limbo state. I have been going to doctors for my problems for three years, now. I have been gluten free since some time last year when I had the startling revelation that I seemed sicker after eating pizzas, breads, etc., I didn't know exactly what was wrong with me, but I knew it was something caused by what I was eating. Well since I went gluten free, my bloodwork came back negative for celiac (I skewed the test I guess). So I am not officially diagnosed, but I know that if I stay away from gluten I feel better. If I do eat it by mistake, I get very down, dark circles under my eyes, I get that big belly, and get sick, sometimes for days.

I guess you just have to wait for your test results. However, gluten free seems to help a lot of people. And, at first you may have to give up dairy, too. Best wishes.

  • 2 weeks later...
ShellyB Newbie

Hi Guys

Thanks for your replies, oh for a crystal ball for us all

The results of the blood test for coeliac came back negative and my GP was so vague about the wheat intolerance this time around, he just asked me how I dealt with my DS when he was wheat intolerant so I came out of my appointment feeling like I had gone 2 steps back. He is referring me to a GI for further tests though and I am going to go armed with as much info as I can as I am not sure what the doc actually took on board when I told him how I was feeling (heck, he even referred me to the wrong department at the hospital - I have zero confidence in him now :( Thankfully the hospital have sorted it all out but I have a few weeks to wait for my appointment (and eat wheat/gluten)

I was so down when I got back home I sent off for intolerance testing (IGg). Result :blink:

Intolerant to wheat, eggs, almonds, buckwheat, chilli peppers, coconut, garlic, peanuts, some green leafy veg (mustard mix) and garlic

Also borderline reaction to corn, gluten, hazelnuts, millet, molluscs, mustard seed

I feel a bit shellshocked but to be honest the foods are those I have suspected were a problem but couldn't be sure, I couldn't see beyond the wheat. Explains why I feel so bad after eating them but the eggs surprised me..... so I ate one last night. Within 20 mins I felt bloated, sick, D.... I always eat eggs with bread/toast and just assumed it was that, not the eggs, guess the experiment proved otherwise

Oohhh I have a lot to learn. Am feeling a bit overwhelmed with it all just now and really would like to get on with wheat/gluten/egg free as a start. Still, at least I can deal with the eggs.

Have just found out there are at least 6 of my family who are diagnosed by docs as wheat intolerant, 3 of us are currently being tested for coeliac and have similar problems :blink: and it seems likely there are 3 more so it will be great to help them before they get too bad.

Guess I'm going to have to be inventive with the cooking from now on...... There is light at the end of the tunnel :lol:

ShellyB

dbmamaz Explorer

I went thru two rounds of broad food testing (see siggy) and each time, i was a bit overwhelmed at how many foods I had to cut out. But once I did cut everything out, I just felt so much better . . . the adjustment is definitely worth it.

horsesjapan Apprentice

I am in limbo too. My tests came back inconclusive I guess. I was positive to the IgG anti-gliadin, but negative to the IgA anti-gliadin. Also negative to the anti-endomysial IgA. But (and it's a big BUT) they didn't test Total IgA or the Ttg IgA test. I am waiting on my referral (the doc didn't put it in like he was supposed to, so a week wasted, now I need to check and make sure he did put it in) to the GI and trying to eat enough wheat/gluten till my appt but it is hard. Unless I eat out (we live in Italy, so when we eat out it's easy to get enough bread, pizza, and pasta lol). My ds2 is IgG reactive to wheat, dairy, soy, egg, and malt so most of our family meals are made so we can all eat the same thing. I worry I'm not consuming enough gluten to make the tests accurate. But with the + IgG test, I will go gluten free as soon as testing is done and see how I feel!

Hang in there!

Nancy

  • 2 months later...
constantly questioning Newbie

Hi SHelly,

Looking at my old posts and I saw this one. I have been off the board for awhile now. LIving Gluten Free and feeling so good that I almost thougth I didn't have an intolerance problem. Little did I know by cheating how sick I would get again. Anyways, how are you doing? Did your tests ever come back gluten intolerant?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,181
    • Most Online (within 30 mins)
      7,748

    Martin Higgins
    Newest Member
    Martin Higgins
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...