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Are these symptoms of Celiac??

Fluffyseal25
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Fluffyseal25 Rookie
Fluffyseal25
Posted

Hello all,

I am new to this forum and have joined as I would like to get advise/opinions from celiac sufferers. I do not know anyone suffering from it and would just like your views on if you think I might have it please?

I have had a sensitive stomach for many years; was tested for celiac many years ago but it came back negative and any future complaints were always dismissed.

I thought I noticed a trend of diarreah when I was consuming dairy; and have coped better since being on lacto free butter and lacto free cream cheese for a few years now.

However, last year around September time; I was in a lot of pain and found myself having the runs literally every time I ate. My stomach was in a lot of pain and I had UTI symptoms. I had an ultra sound done and they said nothing was found. I had a blood test done which found 2 liver function tests to be high.

Now at this point I had been on a high dose of antihistamines for 9 months straight due to chronic hives which flared up in September 2020. I was told my blood work is due to being overdose on these antihistamines and that the function will go back to normal when I am off them for a month. 

I get injections done once a month, which started this year; for my chronic hives and now maybe take one antihistamine every other day. My liver functions tests have barely moved; in fact one of them in my last blood tests crept up higher; however my GP told me it's fine; despite worrying me back in December saying I have to come off all tablets to reverse damage. I spoke to the allergy clinic who are specialists and they stated I would never have been put on the dosage if it would cause this damage; that it cannot be the fexofenadine and that

 

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Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author

Hello all,

I am new to this forum and have joined as I would like to get advise/opinions from celiac sufferers.

I have had a sensitive stomach for many years; was tested for celiac many years ago but it came back negative and any future complaints were always dismissed by doctors.

I thought I noticed a trend of diarreah when I was consuming dairy; and have coped better since being on lacto free butter and lacto free cream cheese for a few years now.

However, last year around September time; I was in a lot of pain and found myself having the runs literally every time I ate. 

I was extremely thirsty. My stomach was in a lot of pain and I had UTI symptoms. I had an ultra sound done and they said nothing was found. I had a blood test done which found 2 liver function tests to be high.

Now at this point I had been on a high dose of antihistamines for 9 months straight due to chronic hives, which flared up in September 2020. I was told my blood work is due to being overdosed on these antihistamines and that the function will go back to normal when I am off them for a month. 

I get injections done once a month, which started this year; for my chronic hives and now maybe take one antihistamine every other day. My liver functions tests have barely moved; in fact one of them in my last blood tests crept up higher. My GP made me come off the tablets I needed to keep the hives at bay; making me fearful about liver damage and whether it is reversible or not; and now she does not seem to care. I told her my blood test results are not even improving despite coming off said tablets and that I have lost weight; am in pain; and she said she had already exhausted all her options in october; that I had been tested for celiac in the past so I don't have it; then said its the tablets that have done this to me and then finished off by saying 'well what do you want me to do about it!'.

I gave up for a month and thought lets just leave it; but I decided to get another GP's opinion as a few people told me it's not normal to have the pain I get after eating.

This GP listened to me and said he wants me to get tested for celiac; but that I have to make sure I eat wheat for a month to get a true reading in the blood test. He is testing my liver again as he isn't happy with the numbers; and he also said that little kidney stone was found back in october; which my other GP failed to tell me.

I am keeping a food and stool diary. I am noticing that I still have a bad tummy after eating crumpets with lacto free cream cheese.. I can handle 1 crumpet but 2 hurts. I am starting to think it never was the normal cream cheese or butter; it was probably the stuff I was putting them on that has been the problem.

I have noticed since keeping a food diary that my most symptom free meal was plain chicken with white rice cooked with egg and olive oil. There was no horrible gassy bloating feeling after eating.

I have noticed that when I have white bread, within 40 minutes I have to run to the toilet as I get a sharp pain in the lower right hand side; as well as I suddenly get really warm. I've not hard diarreah the past week but I will get extreme pain that is relieved a bit when I pass a tiny bit. I have also noticed oil in the bowl and I feel extremely exhausted when going. My stomach sometimes goes rock hard and when I poke it; it feels so painful and tender. I apologise if this is too much detail. I was wondering if anyone else has symptoms like this and if celiac can cause hives or liver function issues?

I hope this all makes sense; I feel like I have jumped around a lot. I have multiple issues going on and it has been a long time period to cover. I'm just a bit nervous about possibly having it; but then at the same time it would be kind of nice to finally get a diagnosis and work out how to manage my life better so that I am not in constant pain.

I would also like to know how much like wheat or whatever I should be consuming for the next month so that I do not jeoporise my blood results please?

 

Thank you in advance!

 

trents Grand Master
trents
Posted

About 18% of celiacs have elevated liver enzymes. That was what eventually led to my celiac diagnosis. Certainly your diarrhea is a classic symptom and dairy intolerance is common among celiacs because of damage to the small bowel villi that line the duodenum.

Can you describe he appearance of your hives? There is a skin disorder called dermatitis herpetiformis (DH) that is a classic marker for celiac disease. It has a characteristic appearance, like little blisters in the bumps.  Celiac disease is the only cause for DH.

Having said all that, you might also have NCGS (Non Celiac Gluten Sesitivity) which shares many of the same symptoms with celiac disease but does not damage the villi and does not produce antibodies. There is no test for NCGS. Celiac disease must first be ruled out. Both conditions require total abstinence from gluten. NCGS is about 10-12x more common than celiac disease.

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! When you took the celiac blood test years ago were you eating gluten daily beforehand? If not, it could explain your negative results, even if you do have celiac disease.

As @trents mentioned, NCGS could also be causing some or all of your symptoms. Have you ever tried a gluten-free diet? If your doctor is unwilling to test you further for celiac disease perhaps it is time to try this out for a few months?

Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author
16 hours ago, Fluffyseal25 said:

Hello all,

I am new to this forum and have joined as I would like to get advise/opinions from celiac sufferers. I do not know anyone suffering from it and would just like your views on if you think I might have it please?

I have had a sensitive stomach for many years; was tested for celiac many years ago but it came back negative and any future complaints were always dismissed.

I thought I noticed a trend of diarreah when I was consuming dairy; and have coped better since being on lacto free butter and lacto free cream cheese for a few years now.

However, last year around September time; I was in a lot of pain and found myself having the runs literally every time I ate. My stomach was in a lot of pain and I had UTI symptoms. I had an ultra sound done and they said nothing was found. I had a blood test done which found 2 liver function tests to be high.

Now at this point I had been on a high dose of antihistamines for 9 months straight due to chronic hives which flared up in September 2020. I was told my blood work is due to being overdose on these antihistamines and that the function will go back to normal when I am off them for a month. 

I get injections done once a month, which started this year; for my chronic hives and now maybe take one antihistamine every other day. My liver functions tests have barely moved; in fact one of them in my last blood tests crept up higher; however my GP told me it's fine; despite worrying me back in December saying I have to come off all tablets to reverse damage. I spoke to the allergy clinic who are specialists and they stated I would never have been put on the dosage if it would cause this damage; that it cannot be the fexofenadine and that

 

Sorry somehow I accidently posted this without finishing it and I tried to edit but it would not let me. I created a new post which hasn’t been seen so I am just replying with the rest of what I wanted to write:

 

I get injections done once a month, which started this year; for my chronic hives and now maybe take one antihistamine every other day. My liver functions tests have barely moved; in fact one of them in my last blood tests crept up higher. My GP made me come off the tablets I needed to keep the hives at bay; making me fearful about liver damage and whether it is reversible or not; and now she does not seem to care. I told her my blood test results are not even improving despite coming off said tablets and that I have lost weight; am in pain; and she said she had already exhausted all her options in october; that I had been tested for celiac in the past so I don't have it; then said its the tablets that have done this to me and then finished off by saying 'well what do you want me to do about it!'.

I gave up for a month and thought lets just leave it; but I decided to get another GP's opinion as a few people told me it's not normal to have the pain I get after eating.

This GP listened to me and said he wants me to get tested for celiac; but that I have to make sure I eat wheat for a month to get a true reading in the blood test. He is testing my liver again as he isn't happy with the numbers; and he also said that little kidney stone was found back in october; which my other GP failed to tell me.

I am keeping a food and stool diary. I am noticing that I still have a bad tummy after eating crumpets with lacto free cream cheese.. I can handle 1 crumpet but 2 hurts. I am starting to think it never was the normal cream cheese or butter; it was probably the stuff I was putting them on that has been the problem.

I have noticed since keeping a food diary that my most symptom free meal was plain chicken with white rice cooked with egg and olive oil. There was no horrible gassy bloating feeling after eating.

I have noticed that when I have white bread, within 40 minutes I have to run to the toilet as I get a sharp pain in the lower right hand side; as well as I suddenly get really warm. I've not hard diarreah the past week but I will get extreme pain that is relieved a bit when I pass a tiny bit. I have also noticed oil in the bowl and I feel extremely exhausted when going. My stomach sometimes goes rock hard and when I poke it; it feels so painful and tender. I apologise if this is too much detail. I was wondering if anyone else has symptoms like this and if celiac can cause hives or liver function issues?

I hope this all makes sense; I feel like I have jumped around a lot. I have multiple issues going on and it has been a long time period to cover. I'm just a bit nervous about possibly having it; but then at the same time it would be kind of nice to finally get a diagnosis and work out how to manage my life better so that I am not in constant pain.

I would also like to know how much like wheat or whatever I should be consuming for the next month so that I do not jeoporise my blood results please?

 

Thank you in advance!

Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author
16 hours ago, trents said:

About 18% of celiacs have elevated liver enzymes. That was what eventually led to my celiac diagnosis. Certainly your diarrhea is a classic symptom and dairy intolerance is common among celiacs because of damage to the small bowel villi that line the duodenum.

Can you describe he appearance of your hives? There is a skin disorder called dermatitis herpetiformis (DH) that is a classic marker for celiac disease. It has a characteristic appearance, like little blisters in the bumps.  Celiac disease is the only cause for DH.

Having said all that, you might also have NCGS (Non Celiac Gluten Sesitivity) which shares many of the same symptoms with celiac disease but does not damage the villi and does not produce antibodies. There is no test for NCGS. Celiac disease must first be ruled out. Both conditions require total abstinence from gluten. NCGS is about 10-12x more common than celiac disease.

Hello there, thank you for your reply!

I can’t describe them very well, when they first broke out they were red rashes everywhere, with fluid under the skin so they were like raised and burning, but there were never any blisters. I googled the rashes you mentioned and they don’t look like that. 

Wow so even if I test negative it might still be that gluten is an issue.. I had never heard of that, that’s interesting thank you

Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author
15 hours ago, Scott Adams said:

Welcome to the forum! When you took the celiac blood test years ago were you eating gluten daily beforehand? If not, it could explain your negative results, even if you do have celiac disease.

As @trents mentioned, NCGS could also be causing some or all of your symptoms. Have you ever tried a gluten-free diet? If your doctor is unwilling to test you further for celiac disease perhaps it is time to try this out for a few months?

Hello there, thank you for your reply! 
I can’t remember, it was such a long time ago. All I know is I never was told to make sure to eat gluten before the test.

I forgot to mention I was diagnosed with an underactive thyroid a few years ago. Have only recently just come off levothyroxine due to thyroid coping by itself. I read that people with celiac often will have an auto immune disorder or is that a myth? 
 

I have tried a few gluten free things in the past like Narn Chocolate oat biscuits for breakfast instead of normal cereal or toast and have had less pain. I have also found I am better with rice than I am pasta. I tried gluten free pasta a few months ago and didn’t have that nasty bloating and pain after.

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Lakergirl7491 Rookie
Lakergirl7491
Posted

I wanted to throw out that many Celiacs can't tolerate the caseins in dairy as opposed to the lactose. Once I stopped all dairy and made Ghee to remove the caseins my stomach issues got a lot better. With all the nut milks out there it's really not that hard to avoid dairy. Hope this helps. 

Scott Adams Grand Master
Scott Adams
Posted
3 hours ago, Fluffyseal25 said:

Hello there, thank you for your reply! 
I can’t remember, it was such a long time ago. All I know is I never was told to make sure to eat gluten before the test.

I forgot to mention I was diagnosed with an underactive thyroid a few years ago. Have only recently just come off levothyroxine due to thyroid coping by itself. I read that people with celiac often will have an auto immune disorder or is that a myth? 
 

I have tried a few gluten free things in the past like Narn Chocolate oat biscuits for breakfast instead of normal cereal or toast and have had less pain. I have also found I am better with rice than I am pasta. I tried gluten free pasta a few months ago and didn’t have that nasty bloating and pain after.

If you've noticed a correlation with your symptoms when you eat large amounts of gluten, then at the least you likely have non-celiac gluten sensitivity, and unfortunately there is no test for this, although it is ~10x more common than celiac disease.

If you don't want to go through the trouble of getting re-tested for celiac disease, which would mean eating 2 slices of wheat bread daily for 6-8 weeks beforehand, then you may want to just go gluten-free for a few months and see if you get symptom relief.

  • 1 month later...
Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author

Hello there,

Thank you for the replies, I did read them last month but forgot to go back on!
I have an update.

After 4 weeks of consuming gluten every day, I had a blood test done for celiac. I immediately went on a gluten free diet and have been a lot better. I have barely suffered constipation, had no diarreah and barely had stomach pains. I have done a test where I had KFC chicken which I know has gluten, and it caused me pain within an hour of eating. I tried a McDonald’s a few days later after going back to gluten free and found I was in pain and very gassy for the next 12 hours.

 

My blood results came back negative. I kept a food diary like my doctor asked, but when I spoke to them on the phone they were not interested. They said I have tested negative for coeliac and that it’s processed and refined foods that are doing this. He said I need to go natural. 
He stated my liver results had improved and I asked him ‘why were they high?’
On our last call he asked me about alcohol consumption and I said no I do not drink.
 

He questioned it and I said I don’t drink I hate alcohol, my father is an alcoholic and everything I have seen has put me off, Again this time, he proceeded to question how much alcohol i consumed and asked if I was sure I do not drink and then asked how many units do I drink a week. I said I don’t drink I don’t touch the stuff! He then asked me if I was on loads of painkillers last year as my results were high since like May 2021. I said no I was just on steroids and a lot of antihistamines. He said that won’t be it, then asked if I have put on weight, to which I said yes to. Probably around May 2021 I was about 8 stone 6? My heaviest was 9 stone 4 this March when I noticed I was in so much pain after eating anything and felt so bloated. I stopped eating white bread, crumpets etc and dropped about 16 pounds in two months. 

He said my liver has been unhappy with my weight and that’s why it’s been high. I mean I saw my dads blood results from 2019 where at the time he would have been an alcoholic for about 40+ years and our results were nearly the same! 
 

When I told the doctor I have lost about 18 pounds now he said well you could do with losing 2 more, that my ideal weight is 7 stone 12. (I am 5ft 1 inches)
Reading the height vs weight chart I didn’t think I was ever over weight but he is basically telling me that my weight has caused all this and that I basically need to go organic?

I am thinking of just giving up trying to get doctors help, the other doctors at this surgery are worse than he is and I’m thinking of just staying gluten free and looking after myself. 

I am after anyones opinion, what would you do?

 

Thank you in advance

trents Grand Master
trents
Posted
(edited)

The Mayo Clinic recommendation for the serum antibody pretest gluten challenge is the daily consumption of the amount of gluten in two slices of wheat bread (or the equivalent) for six to eight weeks. You only were on gluten for four weeks. I hope this did not compromise the results. But most likely, you have NCGS as opposed to celiac disease. At the end of the day, the answer is the same: total elimination of gluten from the diet for life. When I eliminated gluten from my diet, my liver enzymes normalized within a few months. This might help you begin the gluten-free lifestyle in earnest: 

It's important to realize that the goal is not to reduce the amount of gluten in your diet but to eliminate it, so give attention to cross-contamination issues.

Edited by trents
Fluffyseal25 Rookie
Fluffyseal25
Posted
  • Author
1 hour ago, trents said:

The Mayo Clinic recommendation for the serum antibody pretest gluten challenge is the daily consumption of the amount of gluten in two slices of wheat bread (or the equivalent) for six to eight weeks. You only were on gluten for four weeks. I hope this did not compromise the results. But most likely, you have NCGS as opposed to celiac disease. At the end of the day, the answer is the same: total elimination of gluten from the diet for life. When I eliminated gluten from my diet, my liver enzymes normalized within a few months. This might help you begin the gluten-free lifestyle in earnest: 

It's important to realize that the goal is not to reduce the amount of gluten in your diet but to eliminate it, so give attention to cross-contamination issues.

Thank you for your reply, I have just had a little look at the list of forbidden foods, will read more in depth after my dinner. I noticed rye was on there, and yet my doctor told me that no one should consume bread as it’s basically processed etc and that if I really want to have some form of bread in my diet, that it should be rye bread.

I have a feeling my liver results were better because I had been limiting gluten before I had to do that 4 week gluten diet which I can see you have said was too short. It seems my doctor is just doing his own thing. 
 

So even if it’s just sensitivity I should still try to eliminate? I tried to mention sensitivity but again my GP wouldn’t listen so I couldn’t get any questions answered, he was just point blank not coeliac, you put on weight that’s why your liver is unhappy, lose it and you will be fine and don’t eat processed or refined food. ☹️
 

It costs so much more to go gluten free or organic and it’s been a tough few years financially, I’m definitely going to go through that list and try to plan meals etc 

Scott Adams Grand Master
Scott Adams
Posted

Your doctor is not correct regarding rye—it contains gluten and should be avoided if you’re sensitive to gluten.

trents Grand Master
trents
Posted

The three gluten containing grains are wheat, barley and rye. When it comes to gluten-related medical conditions, your doctors is a dud. Do you have options for providers in your medical system or are you stuck with whoever they give you?

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
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