Is my daughter really a celiac?

[Jenny melton]

My daughter was diagnosed a celiac 2 years ago. She had never had any issues atall throughout her childhood with any kind of food intolerance. Problems arose whilst at college in North Dakota. She wa on a soccer scholarship and very active. In her 4th year just before returning to the UK she had an episode of intense pain in her abdomen which lasted for 3 days. This seemed to be the start of stomach issues. 
upon returning home she was tested as positive for celiac disease. So, she has dutifully followed a gluten free diet for 2 years and feels worse than ever. Everything I ve read on here suggests she should have felt better fairly soon after going gluten free. She is extremely tired all the time, has a lot of stomach bloating and pains in her tummy. She has alot of brain fog and headaches. She is only 27 and after being a healthy active footballer is now struggling on a daily basis. Her doctor just dismisses everything by saying she’s obviously not following a gluten free diet strictly enough!! I feel that she must have been misdiagnosed as surely she should be feeling better. Don’t know where we go from here and how to get help!! 

[trents]

Is she still consuming dairy? Many celiacs cannot tolerate the protein casein in dairy and other intolerances such as to soy, corn and eggs are also common. Celiac disease is all about the dysfunctional development of the immune system pathway that guards the gut.

Edited July 26, 2021 by trents

[Scott Adams]

Her doctors are correct and the first thing that you should look at is whether there might be hidden sources of gluten in her diet, and I agree, she may have other food intolerance issues and casein/dairy is a very common one. This article may be helpful:

 

[Jenny melton]

40 minutes ago, Scott Adams said:

Her doctors are correct and the first thing that you should look at is whether there might be hidden sources of gluten in her diet, and I agree, she may have other food intolerance issues and casein/dairy is a very common one. This article may be helpful:

 

Thx Scott. All the info in the article is helpful but so mind boggling!! Don’t know where to start really to try and help her!! 

[Jenny melton]

3 hours ago, trents said:

Is she still consuming dairy? Many celiacs cannot tolerate the protein casein in dairy and other intolerances such as to soy, corn and eggs are also common. Celiac disease is all about the dysfunctional development of the immune system pathway that guards the gut.

Yes she has tried cutting out dairy but it didn’t seem to help. She does still eat eggs so maybe she could try cutting those out to see if it makes a difference. Thank you 

[RMJ]

Has she had a recent blood test for celiac disease? That would indicate whether traces of gluten are getting into her diet (positive test), or if the doctors should be looking for another cause of her misery (negative test).

[Jenny melton]

10 minutes ago, RMJ said:

Has she had a recent blood test for celiac disease? That would indicate whether traces of gluten are getting into her diet (positive test), or if the doctors should be looking for another cause of her misery (negative test).

No not recently , we have contacted her doctor again and trying to get another blood test . 

[knitty kitty]

On 7/26/2021 at 10:28 AM, Jenny melton said:

My daughter was diagnosed a celiac 2 years ago. She had never had any issues atall throughout her childhood with any kind of food intolerance. Problems arose whilst at college in North Dakota. She was on a soccer scholarship and very active. In her 4th year just before returning to the UK she had an episode of intense pain in her abdomen which lasted for 3 days. This seemed to be the start of stomach issues. 
upon returning home she was tested as positive for celiac disease. So, she has dutifully followed a gluten free diet for 2 years and feels worse than ever. Everything I ve read on here suggests she should have felt better fairly soon after going gluten free. She is extremely tired all the time, has a lot of stomach bloating and pains in her tummy. She has alot of brain fog and headaches. She is only 27 and after being a healthy active footballer is now struggling on a daily basis. Her doctor just dismisses everything by saying she’s obviously not following a gluten free diet strictly enough!! I feel that she must have been misdiagnosed as surely she should be feeling better. Don’t know where we go from here and how to get help!! 

 

Jenny, 

Your daughter's symptoms sound like mine when I was experiencing Gastrointestinal Beriberi.  

Gastrointestinal Beriberi is a result of a deficiency of thiamine (Vitamin B1).  Thiamine is required to provide energy to the body.  Thiamine is water soluble.  Thiamine can only be stored for a few weeks.  Thiamine deficiency can occur in as little as nine days.  More thiamine is required to fight infections.  

As an athlete, your daughter has a higher requirement for thiamine.  

Consuming a diet high in carbohydrates requires more thiamine.

The Gluten Free diet can be low in thiamine.  Gluten containing foods are required to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins.  

My doctors were clueless.  They didn't see anything wrong.  They wrote me off as hypochondriac.  Being a microbiologist and familiar with cell biology, I researched and found the answer in high dose Thiamine.  I began taking over the counter thiamine supplements and started improving within hours.  

This is an under recognized condition.  

"Elevated Lactate Secondary to Gastrointestinal Beriberi"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And....

https://www.healthline.com/health/refeeding-syndrome

Best wishes...

 

[Jenny melton]

1 hour ago, knitty kitty said:

 

Jenny, 

Your daughter's symptoms sound like mine when I was experiencing Gastrointestinal Beriberi.  

Gastrointestinal Beriberi is a result of a deficiency of thiamine (Vitamin B1).  Thiamine is required to provide energy to the body.  Thiamine is water soluble.  Thiamine can only be stored for a few weeks.  Thiamine deficiency can occur in as little as nine days.  More thiamine is required to fight infections.  

As an athlete, your daughter has a higher requirement for thiamine.  

Consuming a diet high in carbohydrates requires more thiamine.

The Gluten Free diet can be low in thiamine.  Gluten containing foods are required to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins.  

My doctors were clueless.  They didn't see anything wrong.  They wrote me off as hypochondriac.  Being a microbiologist and familiar with cell biology, I researched and found the answer in high dose Thiamine.  I began taking over the counter thiamine supplements and started improving within hours.  

This is an under recognized condition.  

"Elevated Lactate Secondary to Gastrointestinal Beriberi"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And....

https://www.healthline.com/health/refeeding-syndrome

Best wishes...

 

Hi there, 

 

many thanks for this information. I shall certainly look into this. 
 

many thanks 

[knitty kitty]

49 minutes ago, Jenny melton said:

Hi there, 

 

many thanks for this information. I shall certainly look into this. 
 

many thanks 

Thiamine is safe and nontoxic even in high doses.  

It can't hurt to try.   

[Jenny melton]

1 minute ago, knitty kitty said:

Thiamine is safe and nontoxic even in high doses.  

It can't hurt to try.   

For sure, I will try anything to help her at this stage. I m off to buy some thiamine this morning. Thank you 

[knitty kitty]

Just now, Jenny melton said:

For sure, I will try anything to help her at this stage. I m off to buy some thiamine this morning. Thank you 

Let us know how it goes! 

All my best!

[trents]

Jenny, just make sure any vitamins or supplements your daughter is taking are themselves gluten free. Wheat starch is sometimes used as a filler in pills.

[Jenny melton]

50 minutes ago, trents said:

Jenny, just make sure any vitamins or supplements your daughter is taking are themselves gluten free. Wheat starch is sometimes used as a filler in pills.

Ahh, ok . I didn’t know that. I will double check . Thank you 

[knitty kitty]

These are the kinds of thiamine I take.  They are gluten free.  

 

https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine?gclid=EAIaIQobChMI-qqQ2YTr8QIVxPrICh2yHQOMEAAYASAAEgKlEvD_BwE

And...

https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html

 

 

[trents]

Jenny, it sounds like some good education as to hidden sources of gluten and cross contamination issues would be helpful to you and your daughter. Recent studies show that most people who think they are eating gluten free are in fact only managing to eat a lower gluten diet. They have eliminated macro sources of gluten such as bread and pasta but are still getting significant gluten exposure from hidden sources and cross contamination. Is your daughter eating cafeteria food at the university or does she do her own food preparation? Understanding where gluten is tucked away in the food supply is really a learning process. For instance, who would ever think wheat would be found in Campbell's tomato soup (and in most canned soups, actually)? Or in most soy sauces? Or sin some kinds of chocolate syrup? Or in some meds and supplements? Some potato salads? Etc., etc., etc. I think it would be very difficult for an active young lady in the university setting to take this as seriously as it needs to be taken. You know, it's all such a bother and gets in the way of one's social life.

Edited July 28, 2021 by trents

[AnnBre]

Just throwing out one more idea, in addition to saying I would see a new physician(!), it may sound silly, but I found out some years ago after having many bouts of pain, that I picked up something while traveling. Even after I was "cured" I still to this day get very easily triggered by changes in even drinking water. 

So, (I'm not one to jump on the latest market hype) more than one doctor over time suggested probiotics (the loaded travel kind), and while many other docs disregard it as helpful, I can only say it worked for me. I did a round after the first time it came back, but now whenever I'm somewhere new, just one seems to help for days. And again, it can't hurt to try those too!

Of course I agree to absolutely get more tests, and would get a second doctor's opinion. Many doctors are stuck in the system and you have to push and be her advocate. Best of luck!

[Jenny melton]

1 hour ago, knitty kitty said:

These are the kinds of thiamine I take.  They are gluten free.  

 

https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine?gclid=EAIaIQobChMI-qqQ2YTr8QIVxPrICh2yHQOMEAAYASAAEgKlEvD_BwE

And...

https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html

 

 

Excellent, thank you 😊 

[Jenny melton]

58 minutes ago, trents said:

Jenny, it sounds like some good education as to hidden sources of gluten and cross contamination issues would be helpful to you and your daughter. Recent studies show that most people who think they are eating gluten free are in fact only managing to eat a lower gluten diet. They have eliminated macro sources of gluten such as bread and pasta but are still getting significant gluten exposure from hidden sources and cross contamination. Is your daughter eating cafeteria food at the university or does she do her own food preparation? Understanding where gluten is tucked away in the food supply is really a learning process. For instance, who would ever think wheat would be found in Campbell's tomato soup (and in most canned soups, actually)? Or in most soy sauces? Or sin some kinds of chocolate syrup? Or in some meds and supplements? Some potato salads? Etc., etc., etc. I think it would be very difficult for an active young lady in the university setting to take this as seriously as it needs to be taken. You know, it's all such a bother and gets in the way of one's social life.

She’s actually been home back in the UK for nearly 4 years now. She only started having problems at the end of her 4 years at Uni. Her diet in the Uni cafe was not great and I m sure this was partly to blame. Foods are treated differently in the states and I wondered if it triggered something in her gut. She is pretty switched on and has researched carefully alot about where you might find hidden gluten which is why we are mystified as to why she still has real problems. Problem now is she’s a very busy , stressed police officer and I believe the stress she has been under had to be a contributing factor!! How she overcomes this I really don’t know. She needs more of a structure to her eating habits but it’s so hard on her shifts. 
 

Thanks for your advice though . Really appreciate it 

[Jenny melton]

38 minutes ago, AnnBre said:

Just throwing out one more idea, in addition to saying I would see a new physician(!), it may sound silly, but I found out some years ago after having many bouts of pain, that I picked up something while traveling. Even after I was "cured" I still to this day get very easily triggered by changes in even drinking water. 

So, (I'm not one to jump on the latest market hype) more than one doctor over time suggested probiotics (the loaded travel kind), and while many other docs disregard it as helpful, I can only say it worked for me. I did a round after the first time it came back, but now whenever I'm somewhere new, just one seems to help for days. And again, it can't hurt to try those too!

Of course I agree to absolutely get more tests, and would get a second doctor's opinion. Many doctors are stuck in the system and you have to push and be her advocate. Best of luck!

Yes absolutely, I feel doctors don’t have the time or inclination to look into these things further. Once you have a label they feel they can just tell you to go away and cut gluten out. She had very little advice and support especially at the beginning . 
 

 

[Rweber]

Check her iron levels too. She could be anemic 

[Jackie Garrett]

On 7/26/2021 at 4:28 PM, Jenny melton said:

My daughter was diagnosed a celiac 2 years ago. She had never had any issues atall throughout her childhood with any kind of food intolerance. Problems arose whilst at college in North Dakota. She wa on a soccer scholarship and very active. In her 4th year just before returning to the UK she had an episode of intense pain in her abdomen which lasted for 3 days. This seemed to be the start of stomach issues. 
upon returning home she was tested as positive for celiac disease. So, she has dutifully followed a gluten free diet for 2 years and feels worse than ever. Everything I ve read on here suggests she should have felt better fairly soon after going gluten free. She is extremely tired all the time, has a lot of stomach bloating and pains in her tummy. She has alot of brain fog and headaches. She is only 27 and after being a healthy active footballer is now struggling on a daily basis. Her doctor just dismisses everything by saying she’s obviously not following a gluten free diet strictly enough!! I feel that she must have been misdiagnosed as surely she should be feeling better. Don’t know where we go from here and how to get help!! 

Hello Jenny 

 I will tell you what happened to me. When I was 6 months old I had Gastroenteritis, then when I was 8 I developed Hives a raised rash it would appear all over my body when I got cold or when the temperature dropped this went on for years my mum took me to the Dr. and they were not really sure what brought it on possible the Penicillin I had taken for something but couldn’t be sure, this went on until my 20’s then it stopped, I then developed  Hayfever really bad also Raynauds where your fingers go white on the end, I always suffered with bad heavy periods too, when I 38 is when I started to have bladder problems up until I started to change a few things in my diet and this is where my journey began. This is quite long but if it helps it’s worth it. The things I have given up not many people will be able to do but I was determined to get my body well and functioning like it should again and I found other things that I liked to turn to. The first thing I gave up was Tea and in one week I noticed my bladder problems was almost gone I couldn’t believe it, it would only return if I had something acidic like Wine, Milk or anything with acids in, so basically my body was in an acidic state it couldn’t tolerate those things, I also had a Scad heart attack at 52 which I believe in my case was brought on my bodies build up of acids and my enzymes unable to break them down, when I had my Scad heart attack I was put on medication that was for Heart Attack patients that had clogged arteries just as a precautionary measure, but mine wasn’t the normal heart attack my arteries were fine,  I believe my attack was a immune response by the strong Caffeine from Coffee that I had had at a friends, as I normally have de- caf so hence my body in an acidic state and the stimulant of the Caffeine and bang chest pain like an allergic reaction really, so I was put on medication and after a while of being on medication I became ravenously hungry like you wouldn’t believe I had gone from 10and a half stone to 13 stone 8 in a matter of 2 months it was truly horrible I couldn’t stop this hunger, my bladder problems came back and so did my Raynauds, so I thought I know what has brought my Scad on I will not have Caffeine not even de- caf I will drink mainly water and a caffeine free herbal tea now and  again like peppermint or Camomile, I came off my medication I wouldn’t recommend that any one do this, but I knew why I had my Scad attack, I started a more alkaline way of eating and sadly I do say without the Dairy, I do miss it, but my body doesn’t like it, the medication I believe left me with tingly fingers like Carpel tunnel syndrome it basically made me acidic again, anyway, in time my hunger subsided thank goodness and I started to loose weight on my more alkaline way of eating, my body had started to work again, I could control my bladder by avoiding things which I now have discovered all the food, drinks and meds, that set me off had High Histamine, i believe/know this has been my problem all of my life. Our bodies make natural Histamine but when our bodies have man made Histamines the body thinks hold on why am I having more of this and I believe goes into survival mode and begins to accumulate and makes us acidic, so when our bodies become acidic that’s when all our problems start with various ailments ranging from serious Diseases to Allergic reactions, so in my case and believe in many cases, too much Histamine in our bodies could be the problem but we are not told about this, I wasn’t, I had to find out for myself, I never connected milk to my health issues it has high histamine in, was this the root cause of my problems ??? It’s a shame as I love Dairy, I can’t even tolerate things with Citric acid/ Lactic acid as this contains the bacteria from milk in most ingredients it acts as a preservative also Lactose is used as a filler in medications so I believe that is why I became so hungry and unwell on my meds it affected my gut micro biome. So basically to keep my self well I try not to have many acidic things and follow a more Alkaline way if eating, I eat meat but not too large a portion and lean at that, lots of veg and fruit, plenty of water and watch my Histamine levels for good health I feel well but I do have to watch my levels, so you see with a lot of us it could be our Histamine levels, I recommend to everyone speaking to a Dietitian just to be safe before changing a diet. I hope your daughter finds the solution to her problems it’s life changing when you do believe me. 
Take care Jackie

 

 

[Jenny melton]

2 hours ago, Jackie Garrett said:

Hello Jenny 

 I will tell you what happened to me. When I was 6 months old I had Gastroenteritis, then when I was 8 I developed Hives a raised rash it would appear all over my body when I got cold or when the temperature dropped this went on for years my mum took me to the Dr. and they were not really sure what brought it on possible the Penicillin I had taken for something but couldn’t be sure, this went on until my 20’s then it stopped, I then developed  Hayfever really bad also Raynauds where your fingers go white on the end, I always suffered with bad heavy periods too, when I 38 is when I started to have bladder problems up until I started to change a few things in my diet and this is where my journey began. This is quite long but if it helps it’s worth it. The things I have given up not many people will be able to do but I was determined to get my body well and functioning like it should again and I found other things that I liked to turn to. The first thing I gave up was Tea and in one week I noticed my bladder problems was almost gone I couldn’t believe it, it would only return if I had something acidic like Wine, Milk or anything with acids in, so basically my body was in an acidic state it couldn’t tolerate those things, I also had a Scad heart attack at 52 which I believe in my case was brought on my bodies build up of acids and my enzymes unable to break them down, when I had my Scad heart attack I was put on medication that was for Heart Attack patients that had clogged arteries just as a precautionary measure, but mine wasn’t the normal heart attack my arteries were fine,  I believe my attack was a immune response by the strong Caffeine from Coffee that I had had at a friends, as I normally have de- caf so hence my body in an acidic state and the stimulant of the Caffeine and bang chest pain like an allergic reaction really, so I was put on medication and after a while of being on medication I became ravenously hungry like you wouldn’t believe I had gone from 10and a half stone to 13 stone 8 in a matter of 2 months it was truly horrible I couldn’t stop this hunger, my bladder problems came back and so did my Raynauds, so I thought I know what has brought my Scad on I will not have Caffeine not even de- caf I will drink mainly water and a caffeine free herbal tea now and  again like peppermint or Camomile, I came off my medication I wouldn’t recommend that any one do this, but I knew why I had my Scad attack, I started a more alkaline way of eating and sadly I do say without the Dairy, I do miss it, but my body doesn’t like it, the medication I believe left me with tingly fingers like Carpel tunnel syndrome it basically made me acidic again, anyway, in time my hunger subsided thank goodness and I started to loose weight on my more alkaline way of eating, my body had started to work again, I could control my bladder by avoiding things which I now have discovered all the food, drinks and meds, that set me off had High Histamine, i believe/know this has been my problem all of my life. Our bodies make natural Histamine but when our bodies have man made Histamines the body thinks hold on why am I having more of this and I believe goes into survival mode and begins to accumulate and makes us acidic, so when our bodies become acidic that’s when all our problems start with various ailments ranging from serious Diseases to Allergic reactions, so in my case and believe in many cases, too much Histamine in our bodies could be the problem but we are not told about this, I wasn’t, I had to find out for myself, I never connected milk to my health issues it has high histamine in, was this the root cause of my problems ??? It’s a shame as I love Dairy, I can’t even tolerate things with Citric acid/ Lactic acid as this contains the bacteria from milk in most ingredients it acts as a preservative also Lactose is used as a filler in medications so I believe that is why I became so hungry and unwell on my meds it affected my gut micro biome. So basically to keep my self well I try not to have many acidic things and follow a more Alkaline way if eating, I eat meat but not too large a portion and lean at that, lots of veg and fruit, plenty of water and watch my Histamine levels for good health I feel well but I do have to watch my levels, so you see with a lot of us it could be our Histamine levels, I recommend to everyone speaking to a Dietitian just to be safe before changing a diet. I hope your daughter finds the solution to her problems it’s life changing when you do believe me. 
Take care Jackie

 

 

Hi Jackie, thank you for telling me your story. Wow, what a journey you ve been on over the years. We will definitely look into this , it’s worth a try. Thanks for telling me your story and I m glad you ve now found what works for you . 
 

regards

Jenny x

 

 

 

 

[Jackie Garrett]

Hello Jenny 

I was wondering how is your daughter getting along, is she feeling better now ?

[Jenny melton]

9 hours ago, Jackie Garrett said:

Hello Jenny 

I was wondering how is your daughter getting along, is she feeling better now ?

Hi there, 

She is still struggling I m afraid. They now say she has IBS alongside the celiac . We think it’s more stress related with all that she’s had going on in her life particularly through her job as a police officer. She needs to break the cycle mentally but we don’t really know how to do that. She’s taking a product called ‘Symprove’ to improve her good  gut bacteria and it has been recommended by a specialist. Apparently you need to take a four month course and she’s only 6 weeks in so we’ ll see. 
 

 

Jenny