Jump to content

  • 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

Im New And Confused And Need Some Help And Advice.

mum24boys

Recommended Posts

mum24boys Newbie
mum24boys
Posted

Hi, I'm based in the UK and am new here. Iv been ill for 1 year now. It started last Nov with what I thought was a sickness and diarrhoea bug (vomiting with a very sulphur smelling vomit disgusting smell) but continued into stomach pain. It seemed to affect me when I ate fatty foods so my GP referred me to the surgeons to have my gall bladder checked and I stopped eating anything with fat in it. Although bread and pasta made me really ill, 1 piece of toast can have me doubled over within 10 mins of eating it. I kept a food diary but the Drs were not interested. After months of been messed around I had a HIDA scan which came back normal. This has led me to start looking into other reasons why im feeling so ill. My symptoms are. Severe stomach cramps/ache, bloating, constipation/diarrhoea alternating, vomiting, heartburn, wind, feeling sick, rumbling stomach. More recently these other symptoms have started from August this year, erratic periods that are all over the place and terrible pmt which iv not suffered from since I was a teen, hot flushes, raised temp not a fever but to 37.9, headaches, flu like symptoms, odd watery taste in my mouth, Cold sweats, tiredness, aching joints specifically my feet and knuckle joint on the left hand, total disinterest in sex and an odd stitch like pain in my right side and spots even though im 37 and a swollen feeling in my throat. Iv had a camera down and that showed mild irritation which I was put on a PPI for, a HIDA scan which was normal and blood tests which all come back normal. Iv been in hospital once about 4 weeks ago because of the pain and am on tramadol and oramorph. My GP has tested me for Coeliac last week and the result is normal. Less than 1.23 but I don't know what that means. Iv been on a gluten free diet from last Monday. My GP told me to continue to eat gluten until the test as I had stopped eating gluten a week before but as soon as I had the test I went back to gluten-free. Could this be the reason it came back normal? I'm slowly starting to feel better my spots are healing and my joints are not so achy but I'm still getting bad stomach pains and am really tired. Although after reading some of your advice its really not so surprising. Question is do I really need a diagnosis as there is no way im going to eat something which is obviously making me ill as I know I feel better not eating it. Iv got to go for an endoscopic ultrasound tomorrow and im going to ask them to do a biopsy for coeliac as im only doing this once. Do I forget all the Drs and go with what I think it is ie Coeliac disease? My youngest son has severe systemic onset juvenile arthritis and iv read about the connection. Would it make coeliac more likely in me? He keeps complaining about belly ache after eating bread so im going to get him tested at his next clinic app. Please Help.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

get your son tested NOW. do not wait. then you both go guten free. The advantage of dx for you in the UK is there is some recompense from you NHS for gluten free food. good luck

nvsmom Community Regular
nvsmom
Posted

With the swollen feeling in your throat, and all your symptoms, it could be a thyroid problem too. The symptoms largely fit. Try googling the symptoms and see what you think.

Can you get your celiac test results and the reference ranges? There are a few tests that many are knowledgeable about here and we might be able to advise you on what was done. If you were gluten-free, it could affect your results too. False negative can happen in testing too.

It's possible that you have non-celiac gluten intolerance which has all the horrible symptoms but does not have the intestinal damage.

I agree that you should test your son as soon as possible. There is a link between rhuematic diseases and gluten intolerance; I've heard it can cause flares and make them longer lasting so it's definitely something to check.

Best wishes.

mum24boys Newbie
mum24boys
Posted
  • Author

With the swollen feeling in your throat, and all your symptoms, it could be a thyroid problem too. The symptoms largely fit. Try googling the symptoms and see what you think.

Can you get your celiac test results and the reference ranges? There are a few tests that many are knowledgeable about here and we might be able to advise you on what was done. If you were gluten-free, it could affect your results too. False negative can happen in testing too.

It's possible that you have non-celiac gluten intolerance which has all the horrible symptoms but does not have the intestinal damage.

I agree that you should test your son as soon as possible. There is a link between rhuematic diseases and gluten intolerance; I've heard it can cause flares and make them longer lasting so it's definitely something to check.

Best wishes.

Thanks very much for both of your replies. Yes I will definitely get Dominic tested. He is only 4 and is the size of a 2 year old due to the prednisolone he was taking. He is currently stable on Tocalizamab infusions which he goes into hospital every 2 weeks to have. Most of the mainstream treatments did not work for him and he has really been through it as he was dx when he was 14mths and everything that could go wrong did. He is back next week and I will email his consultant and ask her. She is very good it should not be a problem. He is the most picky eater I know and lives on bread and pasta so getting him onto a gluten free diet will be a struggle but if he needs to then he will. I agree it could be my thyroid I had not realised that, although my husbands cousin had just been diagnosed with coeliac after having a thyroid problem herself. Iv got an appointment to see my GP next week. I really appreciate all the answers and suggestions as it gives me something to ask my Dr. With the swollen throat it only happened when I ate something with gluten in it. Im not that surprised the test came back negative as my diet has not been great for a couple of months because of the pain, so have been sticking to fruit and veg with lean meat. I have seen the non coeliac gluten intolerance and it could be that. That was why I asked if I really need a dx as the treatment is the same. Im not that desperate to be confirmed even though we do get some gluten-free food through the NHS but I have to pay for my prescriptions. Im not sure how they work over here it could end up costing me more. Good thought though. Again many thanks for your replies. I forgot to add in my initial post that im also dairy free as drinking cows milk in tea, cheese, butter and cream make me ill. Butter gives me terrible pain along with bread seemed to make my stomach ache although the range of replacements is surprisingly good and I really like soy milk and wont be going back to cows milk regardless of what happens or dx with.

GFinDC Veteran
GFinDC
Posted

Hi Mum24boys,

Celiac can cause children to be short and not grow. So getting the kid tested is a good idea.

Thyroid problems are linked with celiac, especially Hashimoto's Thyroiditis. But I don't know of a reason thyroid would cause your stomach to be irritated. Low thyroid levels can cause slow digestion though.

Have you been tested for wheat allergy?

mum24boys Newbie
mum24boys
Posted
  • Author

Hi Mum24boys,

Celiac can cause children to be short and not grow. So getting the kid tested is a good idea.

Thyroid problems are linked with celiac, especially Hashimoto's Thyroiditis. But I don't know of a reason thyroid would cause your stomach to be irritated. Low thyroid levels can cause slow digestion though.

Have you been tested for wheat allergy?

Iv never been tested for wheat allergy, I started the gluten free diet as soon as I had the results of my HIDA scan and they said my gall bladder was not the problem. Iv had an endoscopic ultrasound today and the result was nothing abnormal detected. The Dr asked me how strict I am with my diet and I'm very strict so he said nothing would show on a biopsy and I would have to eat 6 pieces of bread every day for the next 6 weeks to show up. There is no way I'm doing that it will make me extremely ill and as you know I have my young son to care for and his needs come before mine, especially if it can be avoided and when I'm starting to feel better. Iv emailed my sons consultant and he will have the test added to his regular bloods that he has taken every 2 weeks. I think I'm just going to carry on as I am. I'm not bothered about having a Dr sit down and tell me a definite dx. I think I either have coeliac or non coeliac gluten intolerance. As the treatment is the same for both iv nothing to lose, especially as I'm starting to feel better. My joints are no where near as achy as they were and my spots are clearing up already and my head feels so much clearer than it did. I still get stomach pain and feel a bit sick after my main meal in the evening but even then that's reduced from all day every day. As my mum pointed out to me its taken over a year to get to this point its not going to resolve overnight. Its odd that when you cut out these foods, symptoms that you never even realise you had get better. I would never have thought that a foggy brain really applied to me until now. Strange. I'm going to ask my GP to test my thyroid but after thinking about it some of the main symptoms don't really apply to me but no harm in asking anyway so thanks for the idea I would not have thought of it till I joined here. Thanks for reading and replying xx

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748
    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.