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

Is it possible for a Celiac disease patient to develop other intolerances?


Romeo1990

Recommended Posts

Romeo1990 Rookie

I couldn´t quite think of a title that could properly convey all that I wish to ask through this post, but went with the one above....

 

Is it possible for you to develop intolerances to other foods as well? Now, to elaborate on what I mean by "intolerance", could certain foods trigger anxiety and panic in a patient who already has the Celiac disease?

 

And my second question is, diarrhea, gas and such digestive issues aside, could gluten intolerance itself trigger anxiety and panic if you happen to consume something containing it?
 


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



Celiac.com Sponsor (A8-M):



fergusminto Apprentice

Hi, firstly I do not have a medical background but I do suffer from Coeliac. No 'intolerances' linked to celiac disease have been proven but you only need to read comments on this site to see many of us do complain of such. Since being diagnosed 8 years ago I have developed intolerances to oats, all dairy, eggs, soya, Brazil nuts, all preservatives, pears and sulphites (in wine). Tends to be the proteins that are the cause. Symptoms tend to be tiredness, headaches, migraines and a low grade depressive/low feeling - just fed up, no oomph! Can last for between 2 and 5 days.

So, you are not alone. Should add that these are not "allergies" which are much more serious. 

cyclinglady Grand Master

Anxiety is a common symptom of celiac disease (there are over 200 symptoms linked to celiac disease).  It usually improves on a strict gluten free diet.  When were you diagnosed?  Have you had any follow-up testing to see if you are diet compliant?  

 Intolerances are common among celiacs.    The most common is lactose intolerance.  This  is due to damaged villi that are unable to release the enzymes need to digest/process lactose (milk sugars).   Other common intolerances can include corn or soy, etc.

learn more about this from one of the world's leading researchers, Dr. A. Fasano:

 

Romeo1990 Rookie

Hello friends, thank you so much for the responses. Mine is a strange, very weird case. I haven´t yet been diagnosed with the Celiac disease, or any other for that matter. I´m beginning to feel very frustrated at so far no diagnose being reached, despite regular visits to doctors. Regardless, I´ll relate my story, in the hope to find out whether this makes sense to any Celiac patient.

In January this year, I began to notice that I´d developed a sudden intolerance to anything that I ate that contained sugar. From a cake, to a an ice-cream, to a juice, to a candy. I removed it altogether from my diet, then that intolerance slowly spread to caffeine. After removing that, it spread to eating fish. After that, to Stevia sweetner, then to even artificial sweeteners, and ultimately then to a protein shake that I was on since years (as a meal replacement to keep my weight in check), and now recently it has spread to yoghurt, breads, watermelons and mangoes. Butter too is a suspect but it is still not fully verified as something that triggers off the symptoms.

Now, for anything wondering what "intolerance" signifies and what my symptoms are, first and foremost, insomnia, anxiety, panic, heart pounding, and tremors in the whole body, like an earthquake. Removing all those aforementioned items from my diet does alleviate my suffering, but I´m not sure anyone would be happy to lead a life like I´m leading right now, where you´ve to double check everything you eat, and plus the biggest fear of mine being lest it keeps spreading to more and more foods.

Any sane person would advise me to see a doctor, but trust my sanity, I´ve seen a dozen of those, from different fields, different specialists. They´re as dumbfounded as you´ll probably be after reading this, a dietitian even going to the extent of terming this as whole new illness altogether in medical science!

It has been suggested to me by some that it could be the Celiac disease, which might´ve over the years caused such intestinal damage that it can´t quite absorb other foods too, hence the problems. Does this make sense to anyone?

Sure enough I´ll keep pushing the doctors and hope that a diagnose can be reached.

GFinDC Veteran

Hi Romeo,

Have you had your vitamin and mineral levels checked?  Celiac can cause mal-absorption and that can cause vitamin deficiencies.  Vitamin deficiencies can cause a lot of symptoms.  B-vitamins are needed for nerve health.  You should have the vitamin levels checked before starting any supplements, as it is possible to have too much of a vitamin also.  And too much of some can cause symptoms as well.

 

Romeo1990 Rookie
20 hours ago, GFinDC said:

Hi Romeo,

Have you had your vitamin and mineral levels checked?  Celiac can cause mal-absorption and that can cause vitamin deficiencies.  Vitamin deficiencies can cause a lot of symptoms.  B-vitamins are needed for nerve health.  You should have the vitamin levels checked before starting any supplements, as it is possible to have too much of a vitamin also.  And too much of some can cause symptoms as well.


 

It was done the last Tuesday and it showed normal results - neither deficiency, nor too much of anything. 
 

cyclinglady Grand Master
On August 20, 2016 at 2:12 AM, Romeo1990 said:

Hello friends, thank you so much for the responses. Mine is a strange, very weird case. I haven´t yet been diagnosed with the Celiac disease, or any other for that matter. I´m beginning to feel very frustrated at so far no diagnose being reached, despite regular visits to doctors. Regardless, I´ll relate my story, in the hope to find out whether this makes sense to any Celiac patient.

In January this year, I began to notice that I´d developed a sudden intolerance to anything that I ate that contained sugar. From a cake, to a an ice-cream, to a juice, to a candy. I removed it altogether from my diet, then that intolerance slowly spread to caffeine. After removing that, it spread to eating fish. After that, to Stevia sweetner, then to even artificial sweeteners, and ultimately then to a protein shake that I was on since years (as a meal replacement to keep my weight in check), and now recently it has spread to yoghurt, breads, watermelons and mangoes. Butter too is a suspect but it is still not fully verified as something that triggers off the symptoms.

Now, for anything wondering what "intolerance" signifies and what my symptoms are, first and foremost, insomnia, anxiety, panic, heart pounding, and tremors in the whole body, like an earthquake. Removing all those aforementioned items from my diet does alleviate my suffering, but I´m not sure anyone would be happy to lead a life like I´m leading right now, where you´ve to double check everything you eat, and plus the biggest fear of mine being lest it keeps spreading to more and more foods.

Any sane person would advise me to see a doctor, but trust my sanity, I´ve seen a dozen of those, from different fields, different specialists. They´re as dumbfounded as you´ll probably be after reading this, a dietitian even going to the extent of terming this as whole new illness altogether in medical science!

It has been suggested to me by some that it could be the Celiac disease, which might´ve over the years caused such intestinal damage that it can´t quite absorb other foods too, hence the problems. Does this make sense to anyone?

Sure enough I´ll keep pushing the doctors and hope that a diagnose can be reached.

Please do not take offense, but have you researched orthorexia?  

Open Original Shared Link

I recently read about this in relation to gluten/(celiac disease) in "Gluten Exposed" by Peter Green, Director of the celiac disease center at Columbia University.  


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



Celiac.com Sponsor (A8-M):



Romeo1990 Rookie
45 minutes ago, cyclinglady said:

Please do not take offense, but have you researched orthorexia?

Open Original Shared Link

I recently read about this in relation to gluten/(celiac disease) in "Gluten Exposed" by Peter Green, Director of the celiac disease center at Columbia University.

Nope, no offence taken, none at all. But I may explain here that every other symptom, anxiety, panic, insomnia, follows tremors. The first thing that happens are tremors, which if don´t stop after two-three occurrences, make me full awake and cause the heart palpitations. I once placed my brother´s hand on my shoulder and he felt it.

 

Initially the doctor thought it to be just anxiety that isn´t related to any food after all, so I was prescribed Cetalopram. It kept me away from panicking a bit, but the tremors remained and so did the insomnia hence. And then I removed everything from my diet that caused trouble, and here I was without tremors, so much that I discontinued Cetalopram without any issues (I´m sure you must be aware how tasking that can be on patients, mentally).

 

I really love some of the foods that would cause trouble, and in order not to completely give up on eating them, I would keep experimenting and keep hoping that it´ll be fine. Mango is something that I kept eating shamelessly for more than two months, but just yesterday decided that I can´t take it, and a similar thing happened with watermelons.

 

Something else that has lessened my tremors is the switching of my Thyroid medicine. The earlier one would increase the frequency of tremors, whenever they happened. I wasn´t as obsessed with what I eat, hell no, but the ongoing troubles have. I used to love my black tea more than anything else, but that too has been taken away. My point being, some of those foods were a part of my daily routine and ones I actually miss. My plan right now is to give myself a few weeks break and then to return to some of them to see whether they still cause the trouble. I mean, it could well be that it might´ve been something to do with my Thyroid and its medication?

GFinDC Veteran

Hi Romeo,

That's good your vitamins and such are ok.  The answer to your question about  other intolerances is yes, celiacs can develop other food intolerances beyond gluten.  The forum used to show a signature line for each member and often it listed their other food intolerances beyond gluten.  That signature line went away an a forum upgrade some time ago.  This forum subsection is specifically for other food intolerances.

I have intolerances to nightshades, soy, carrots, celery, dairy, and some other things I don't remember at the moment.  Corn is another common intolerance, and eggs.

Your thyroid medication could definitely make you have tremors.If you have too much thyroid hormone in our system you could get any of the symptoms of hyperthyroid disease.

Open Original Shared Link

 

Rakdan Explorer

An allergy is not necessarily more serious than an intolerance.

Celiac causes your body to attack itself, just like with an allergy, yet it is not an allergy.  Intolerance can cause any symptom that an allergy can, with the exception of anaphylaxis. Except in the tiny minority of cases where there is anaphylaxis, an allergy cannot be diagnosed by symptoms.

Severe intolerant reactions can be much more severe than mild allergic reactions. The effects can last for months, and contributes to other illnesses, as many of the articles on this site imply.

If someone has an extreme allergic reaction (the only kind that requires an EpiPen), and then uses an EpiPen, it is not likely to cause further health issues because the issue was treated immediately. If someone has an intolerant reaction causing severe diarrhea, it is going to affect their general health, especially because there is no magic EpiPen to prevent further damage. Celiac can also prevent your body from absorbing what it needs from the food. For this reason, I would expect that most health practitioners would agree that food intolerance is a partial indirect cause of many more deaths than is allergy.

sdbookmom Newbie

My daughter was first diagnosed with celiac, and still is, but last year we discovered she also has Ehlers Danlos Hypermobility syndrome or EDHS.  The two often go hand in hand.  Right now her "safe" food list is miniscule as she continues to develop food sensitivities.  It has something to do with the Mast Cells that live in the connective tissue.  My husband (& I) both have EDHS, his mostly manifests as food intolerances that cause severe panic attacks and episodes of POTS.  You might check out edhs.info. or do a search for Ehlers danlos & celiac. 

boron Rookie

Due to celiac disease, you can have fructose malabsorption or lactose intolerance or both at the same time. When your celiac disease is not active, fructose malabsorption and lactose intolerance should subside too. Unless you have them independently of celiac disease.

  • 7 months later...
Romeo1990 Rookie

Do not ever, and neither let any relative or friend, take a medicine by the name of Ciprofloxacin, or any other antibiotic of the same class. To be precise, any antibiotic of Fluoroquinolone or Quinolone class. A trick: all antibiotics that end with "oxacin" belong to the same class. If you get it prescribed, push your doctor for an alternative or better in advance let him know that you can t tolerate that. Not even as eye or ear drops - in ANY form!

Google "Floxie" or "floxed" to read more about it, basically about the number of people´s life it has literally destroyed, mentally, physically, emotionally! It did mine, although I discovered very recently that all my health issues began a week after taking it in January 2016.

If, God forbid, you or a beloved one has taken this in the recent times, then be advised that you should avoid taking any other antibiotics or any other strong type of medicine (such as steroids - by the names of cortisone, Prednisone, Prednisolone etc.) or even NSAID pain-killers (ibuprofen, Diclofenac, Aspirin etc.) for at least half a year after that.
-----------
Tremors, anxiety, panic attacks, brainfog, insomnia, intolerance towards many foods, medicines, vitamins and supplements, concentration issues, light sensitivity, ever-present tingling sensation in my right foot, heart palpitations, difficulty in reading and understanding, spells of severe depression, weakness, fatigue, delayed and slow reactions to situations and questions, spells of memory loss, - despite taking it 15 months ago! It has destroyed the abilities and the intelligence of a poet, an intellectual thinker, a guy known for witty replies and unmatched sense of humour and timing. This poison has changed the personality of a guy named Rawal Afzal - myself that is!

Romeo1990 Rookie
On 23.8.2016 at 5:54 PM, boron said:
On 19.8.2016 at 9:15 PM, fergusminto said:

Hi, firstly I do not have a medical background but I do suffer from Coeliac. No 'intolerances' linked to celiac disease have been proven but you only need to read comments on this site to see many of us do complain of such. Since being diagnosed 8 years ago I have developed intolerances to oats, all dairy, eggs, soya, Brazil nuts, all preservatives, pears and sulphites (in wine). Tends to be the proteins that are the cause. Symptoms tend to be tiredness, headaches, migraines and a low grade depressive/low feeling - just fed up, no oomph! Can last for between 2 and 5 days.

So, you are not alone. Should add that these are not "allergies" which are much more serious. 

 

On 21.8.2016 at 5:17 PM, cyclinglady said:

Please do not take offense, but have you researched orthorexia?  

Open Original Shared Link

I recently read about this in relation to gluten/(celiac disease) in "Gluten Exposed" by Peter Green, Director of the celiac disease center at Columbia University.  

 

On 20.8.2016 at 0:59 PM, GFinDC said:

Hi Romeo,

Have you had your vitamin and mineral levels checked?  Celiac can cause mal-absorption and that can cause vitamin deficiencies.  Vitamin deficiencies can cause a lot of symptoms.  B-vitamins are needed for nerve health.  You should have the vitamin levels checked before starting any supplements, as it is possible to have too much of a vitamin also.  And too much of some can cause symptoms as well.

 

 

On 21.8.2016 at 11:37 PM, GFinDC said:

Hi Romeo,

That's good your vitamins and such are ok.  The answer to your question about  other intolerances is yes, celiacs can develop other food intolerances beyond gluten.  The forum used to show a signature line for each member and often it listed their other food intolerances beyond gluten.  That signature line went away an a forum upgrade some time ago.  This forum subsection is specifically for other food intolerances.

I have intolerances to nightshades, soy, carrots, celery, dairy, and some other things I don't remember at the moment.  Corn is another common intolerance, and eggs.

Your thyroid medication could definitely make you have tremors.If you have too much thyroid hormone in our system you could get any of the symptoms of hyperthyroid disease.

Open Original Shared Link

 

 

On 22.8.2016 at 9:53 PM, Rakdan said:

An allergy is not necessarily more serious than an intolerance.

Celiac causes your body to attack itself, just like with an allergy, yet it is not an allergy.  Intolerance can cause any symptom that an allergy can, with the exception of anaphylaxis. Except in the tiny minority of cases where there is anaphylaxis, an allergy cannot be diagnosed by symptoms.

Severe intolerant reactions can be much more severe than mild allergic reactions. The effects can last for months, and contributes to other illnesses, as many of the articles on this site imply.

If someone has an extreme allergic reaction (the only kind that requires an EpiPen), and then uses an EpiPen, it is not likely to cause further health issues because the issue was treated immediately. If someone has an intolerant reaction causing severe diarrhea, it is going to affect their general health, especially because there is no magic EpiPen to prevent further damage. Celiac can also prevent your body from absorbing what it needs from the food. For this reason, I would expect that most health practitioners would agree that food intolerance is a partial indirect cause of many more deaths than is allergy.

 

On 23.8.2016 at 10:44 AM, sdbookmom said:

My daughter was first diagnosed with celiac, and still is, but last year we discovered she also has Ehlers Danlos Hypermobility syndrome or EDHS.  The two often go hand in hand.  Right now her "safe" food list is miniscule as she continues to develop food sensitivities.  It has something to do with the Mast Cells that live in the connective tissue.  My husband (& I) both have EDHS, his mostly manifests as food intolerances that cause severe panic attacks and episodes of POTS.  You might check out edhs.info. or do a search for Ehlers danlos & celiac. 

 

On 23.8.2016 at 5:54 PM, boron said:

Due to celiac disease, you can have fructose malabsorption or lactose intolerance or both at the same time. When your celiac disease is not active, fructose malabsorption and lactose intolerance should subside too. Unless you have them independently of celiac disease.

Due to celiac disease, you can have fructose malabsorption or lactose intolerance or both at the same time. When your celiac disease is not active, fructose malabsorption and lactose intolerance should subside too. Unless you have them independently of celiac disease.

Guys, please see my post above. I don´t and possibly never have an exact medical diagnose that´ll, in a blood report, a scan or any other test, reflect my health troubles, but I do have a reason or an exact background to it.

Cipro, or any other antibiotics from the class of Fluoroquinolone or Quinolone is very capable of destroying people´s lives. It´s world famous for causing mysterious illnesses, in many cases symptoms that are triggered by certain or let´s say a lot of foods and drinks, sometimes even water! In cases they´re permanent, in cases if you´ve luck then at a minimum five years are required for the gradual progress from such issues; and don´t get me even started on the permanent side-effects that it´s causing as far as the physical aspect of things is concerned. It has sent people to wheelchairs!

I cannot change what´s happened to me, but I can use this experience to warn others, so I suddenly remembered this thread today and thought of posting here again. In short, avoid that poison!
 

Ennis-TX Grand Master

Intriguing, question did you ever get the celiac diagnosis? We have been talking about something and new research as of late. This is in regards of how the dormant celiac in people with the gene can get full blown celiac after having something happen that triggers the entire immune system to change and bring about celiac disease. There is a recent study release about a virus that is doing it, and we have seen cases were some other shock to the system can bring it out like a severe sickness, pregnancy, overdosing. etc.   This medication your talking about could be another culprit that puts so much strain and messes with the immune system in a way that it can trigger the autoimmune disease in those who already have the genetic abnormalities that cause it. 

Regardless of if you have celiac or not I think the information about how our immune system from the research could be applied in a similar fashion explain how a antibiotic such as this can mess and alter ones immune system by effecting the gut and the way it processes food. Might be worth a read to see if you can cross reference some information about how it could do so and effect your immune system the way it did with all the intolerance issues.

https://www.celiac.com/forums/topic/117762-geneceliac-activated-by-virus/

 

I always have really bad gastric distress for weeks after taking a antibiotic and pretty much refuse to them myself.

Thanks for the warning about this drug so others can opt for a different one.

Romeo1990 Rookie
On 9.4.2017 at 6:52 PM, Ennis_TX said:

Intriguing, question did you ever get the celiac diagnosis? We have been talking about something and new research as of late. This is in regards of how the dormant celiac in people with the gene can get full blown celiac after having something happen that triggers the entire immune system to change and bring about celiac disease. There is a recent study release about a virus that is doing it, and we have seen cases were some other shock to the system can bring it out like a severe sickness, pregnancy, overdosing. etc.   This medication your talking about could be another culprit that puts so much strain and messes with the immune system in a way that it can trigger the autoimmune disease in those who already have the genetic abnormalities that cause it. 

Regardless of if you have celiac or not I think the information about how our immune system from the research could be applied in a similar fashion explain how a antibiotic such as this can mess and alter ones immune system by effecting the gut and the way it processes food. Might be worth a read to see if you can cross reference some information about how it could do so and effect your immune system the way it did with all the intolerance issues.

https://www.celiac.com/forums/topic/117762-geneceliac-activated-by-virus/

 

I always have really bad gastric distress for weeks after taking a antibiotic and pretty much refuse to them myself.

Thanks for the warning about this drug so others can opt for a different one.

Thank you so much for such an informative post! I´ve read the summary of that particular research and must say it sounds interesting.

 

The fact that my symptoms aren´t of the classic Celiac disease (diarrhea, bloating, abdominal pain or cramps etc.), but of tremors, heart palpitations, insomnia and anxiety, and the fact that the flatbread that we Pakistanis eat in our daily routine doesn´t trigger these symptoms, makes my case really weak in being able to convince a doctor to test for the aforementioned disease.

 

Quinolone antibiotics are famous for causing such cell damages that the symptoms sound like one, two or multiple different diseases, but often the tests show nothing, which´s incredibly frustrating as a patient. My symptoms for example range from diabetes, hyperthyroidism, hypothyroidism, hyperparathyroidism, adrenal insufficiency, heart disorder to the toxicity of fluoride, mercury, lead, and to the Celiac disease. However, the more frustrating thing is that no effort has been made by doctors to test me for these disorders to rule them out, except for diabetes and adrenal insufficiency.

 

Life´s been quite tough mind you. Food intolerance is not my biggest problem anymore; rather, it´s the intolerance that I´ve developed to so many medicines, supplements and vitamins: Magnesium, vitamin D, vitamin E, L-Glutathione, Amino Acids, any antibiotic, any NSAID pain-killer, and most frustratingly, my thyroid medicine and many other medicines. Life truly is awful without my thyroid medicine. And of course, intolerance to water, yes, read again, water! - probably a sensitivity to the chemicals present in the mineral as well as the tap water. Sleep is... well, four out of five nights I wake up 12-14 times at night, this despite being prescribed a sedative. I used to pride myself for having always in life tolerated medicines well and having always completed any antibiotic course without issues. Never in life had I had to contact a doctor again to change any prescribed medicine to another.

 

Taking Quinolone antibiotics is like diving into the sea, which´s a fair choice to make if you find yourself on Titanic, but at least I wouldn´t if I´m on ground. I fully realise how useful they can be, certainly when a patient is facing a life-threatening infection or no other antibiotics works, and I´d therefore never say that it should be banned (although, when I´m really unwell it slips out of my mouth in frustration!).

 

Love, peace and progress!

Ennis-TX Grand Master
2 hours ago, Romeo1990 said:

Thank you so much for such an informative post! I´ve read the summary of that particular research and must say it sounds interesting.

 

The fact that my symptoms aren´t of the classic Celiac disease (diarrhea, bloating, abdominal pain or cramps etc.), but of tremors, heart palpitations, insomnia and anxiety, and the fact that the flatbread that we Pakistanis eat in our daily routine doesn´t trigger these symptoms, makes my case really weak in being able to convince a doctor to test for the aforementioned disease.

 

Quinolone antibiotics are famous for causing such cell damages that the symptoms sound like one, two or multiple different diseases, but often the tests show nothing, which´s incredibly frustrating as a patient. My symptoms for example range from diabetes, hyperthyroidism, hypothyroidism, hyperparathyroidism, adrenal insufficiency, heart disorder to the toxicity of fluoride, mercury, lead, and to the Celiac disease. However, the more frustrating thing is that no effort has been made by doctors to test me for these disorders to rule them out, except for diabetes and adrenal insufficiency.

 

Life´s been quite tough mind you. Food intolerance is not my biggest problem anymore; rather, it´s the intolerance that I´ve developed to so many medicines, supplements and vitamins: Magnesium, vitamin D, vitamin E, L-Glutathione, Amino Acids, any antibiotic, any NSAID pain-killer, and most frustratingly, my thyroid medicine and many other medicines. Life truly is awful without my thyroid medicine. And of course, intolerance to water, yes, read again, water! - probably a sensitivity to the chemicals present in the mineral as well as the tap water. Sleep is... well, four out of five nights I wake up 12-14 times at night, this despite being prescribed a sedative. I used to pride myself for having always in life tolerated medicines well and having always completed any antibiotic course without issues. Never in life had I had to contact a doctor again to change any prescribed medicine to another.

 

Taking Quinolone antibiotics is like diving into the sea, which´s a fair choice to make if you find yourself on Titanic, but at least I wouldn´t if I´m on ground. I fully realise how useful they can be, certainly when a patient is facing a life-threatening infection or no other antibiotics works, and I´d therefore never say that it should be banned (although, when I´m really unwell it slips out of my mouth in frustration!).

 

Love, peace and progress!

Wondering if there is a common additive/filler agent that triggers your issues, corn, silica, talc, etc. that could be triggering these. -_- I came up with a corn allergy and the stuff is in damn near everything.     As for the water it is probably a chemical additive they put in it, (how are you with flavored waters?) I personally have to add a flavoring or brew something with water. Plain water just seems empty to me and I end up drinking it til I get sick as it never quenches my thirst/feels like drinking anything. Sounds very frustrating, other thoughts are perhaps a imbalance between nutrients like sodium, potassium, magnesium, and the vitamins that play a role in their absorption. A imbalance caused by thyroid issues or damaged suffered from your previous antibiotic encounter leading to blocked receptors or inability to process them could lead to the cascading effect........why can the body not be simple and doctors have better test for these.  Anyway just my random thoughts on the matter I wish you luck in finding a path that works for you. Took me years to find me and I still have issues just learning about a new complication last month that changed my life for the better being able to know the cause.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.