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Could an egg allergy cause a false positive on blood screening test?


Tracy66

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Tracy66 Apprentice

Hello. I am new here and am so appreciative to find this forum, I hope my question does not sound silly. We are currently waiting on a biopsy later in the month for my teenage daughter who tested positive on the blood screening test. She was tested only because she was in the Neurology ward being tested for decline in reading and verbal comprehension and finding herself zonning out. Her MRI and EEG were normal. They did a whole lot of bloods. They showed she was anemic and also tested a slight positive for the antibody test. I can understand the Iron levels being low as she mainly ate fish and chicken and not much red meat. She then went on Iron tablets for 4 months and ate red meat 4 times a week. She seemed to be abit better after that but still found herself with symptoms. The Gastroenterologist has ordered a biopsy to be done for Celiacs. She has no physical symptoms of stomach or bowel problems. She is being assessed soon for ADHD and is already diagnosed with annaphylaxis to Egg, Auditory Processing Disorder and Anxiety Disorder. My question is, is it anyway possible the egg allergy could interfere with the blood results causing a false positive? I guess I am just worried and hoping for anything and grasping at straws. I did read here on the forum someone mentioned that a milk allergy could affect the blood results. I should really make an app with her doctor to ask and will do. But just really worried and hoping someone can shed some light on this with past experience or knowledge and hoping there is a possibility it might be the case to alleviate abit of stress until I can see the doctor. Thank you for taking the time to read this. 

 


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trents Grand Master
(edited)

I believe that anaphylaxis involves a different immune system pathway than does celiac disease or other food intolerances.

Very many people with celiac disease have few or no GI distress, at least in the beginning. We call that "silent" celiac disease.

Has your daughter been tested for "pernicious" anemia? This is where there is a lack of something called "intrinsic factor" necessary for the absorption of B12 by the gut which in turn results in anemia, since B12 is a necessary link in the chain of metabolic events responsible for the uptake of iron into the blood. It is extremely common for celiacs to be low in B12 and anemic and I believe the damage to the small bowel caused by celiac inflammation also may be partly responsible for substandard production of intrinsic factor.

Edited by trents
Tracy66 Apprentice

Thank you Trents very much for providing this information. Im not sure if my daughter has been tested for pernicious anemia but the Gastroenterologist did say that her B12 is low aswell. I initially thought it could be because she was never a big red meat eater. After reading your reply I have looked up B12 foods. My daughter drinks loads of milk and loves cheese and fish so she shouldnt be low in B12 due to any lack of dietary foods. The Gastroenterologist app was a zoom meeting during our strict lockdown in Melbourne, it seemed so strange and new to me at the time because I had not done a zoom before. Due to this unfortunately I didn't ask very many questions and I wish I did. With the egg anaphylaxis I can also undertand what you are saying about the different immune pathway.  It all makes sense to me now. Also I should get out of my mind that her having no physical bowel symptoms means she won't have Celiacs.  I now feel better about her having this biopsy, and that it is really neccessary to go through with the procedure as she probably does have a high chance of having celiacs. If she does have Celiacs, and I can see now it is likely, and her bowel is damaged without symptoms, then it is lucky she has been tested without having bowel symptoms because I dont think the local gp would ever have done the test. Thank you Trents you have made me realise that having this biopsy is so important and definitely neccessary. All the best for your journey in this too. Much appreciated.

trents Grand Master

You are most welcome and I hope what I have shared will prove to be of help as you seek to get a handle on your daughter's health issues. Concerning the anaphylactic reaction to egg protein the same way as you would a bee sting in so far as how it engages the immune system.

knitty kitty Grand Master

Tracy66,

I'm concerned about the decline in your daughter's brain function!  

Celiac Disease causes malabsorption which results in malnutrition, vitamin and mineral deficiencies, which can have the same results, the decline in brain function your daughter exhibits.  I am not a doctor.  I have experienced severe vitamin and mineral deficiencies.   

Thiamine (Vitamin B1) deficiency can cause changes in brain function such as the ones you describe.  It's called Wernicke's Encephalopathy.  It's usually seen in alcoholism, which is why my doctors missed it in me.  When my doctors asked me if I drank alcohol, I explained alcohol makes me violently ill so I don't drink.  My doctors shrugged their shoulders and wrote me off as a hypochondriac.  My doctors had not recognized Wernicke's outside of alcoholism.  They were even more clueless about Celiac Disease.  

I'm a microbiologist.  I had learned about vitamins at university.  I researched and started supplementing with thiamine and the other B vitamins and minerals.  

Those things your daughter is experiencing could be due to Thiamine deficiency.  I had similar problems, ADHD, anxiety, problems understanding what was said to me, and more besides.  

 Your daughter improved slightly with inclusion of red meat in her diet.  Red meat is a good source of thiamine.  Thiamine is water soluble and can not be stored for long.  A deficiency can develop quickly if you're not getting enough thiamine.  

The best test for thiamine deficiency is the erythrocyte transketolase test.  

The treatment for thiamine deficiency is high dose Thiamine which is safe because thiamine has no toxicity.  An IV of high dose thiamine can be given by doctors or over the counter thiamine supplements can be used to correct a deficiency.

It's rare to have a single vitamin deficiency.  Deficiencies usually occur in several vitamins because they all work together.  Testing for vitamin deficiencies is part of proper follow up care for Celiacs.  

I want to express a sense of urgency because Wernicke's can progress to Korsakoff's syndrome which can cause permanent damage.

I'm not a doctor.  We can't give medical advice.  But I urge you to discuss this possibility with your doctor.  

I've found this site helpful.

http://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

Please keep us posted on your daughter's progress.  

Hope this helps

16 hours ago, Tracy66 said:

 She was tested only because she was in the Neurology ward being tested for decline in reading and verbal comprehension and finding herself zonning out.  she was anemic and also tested a slight positive for the antibody test.  She is being assessed soon for ADHD and is already diagnosed with Auditory Processing Disorder and Anxiety Disorder. 

 

 

 

trents Grand Master
(edited)

Tracy66, knitty kitty gives good advice. Many of the medical condition spinoffs from celiac disease are nutritional deficiency related. The damaged villi in the small bowel causes reduction in the ability to absorb vitamins and minerals. Also, I wanted to say that celiac disease is not an allergy. It is an autoimmune condition. That can be a little difficult to grasp at first since there is a food trigger involved like we normally would connect with an allergy.

Edited by trents
Posterboy Mentor
On 1/21/2021 at 5:33 PM, Tracy66 said:

They did a whole lot of bloods. They showed she was anemic and also tested a slight positive for the antibody test. I can understand the Iron levels being low as she mainly ate fish and chicken and not much red meat. She then went on Iron tablets for 4 months and ate red meat 4 times a week. She seemed to be abit better after that but still found herself with symptoms

Tracy,

Try have her take some Riboflavin....it has been shown to help Anemia.

It will turn her urine Yellow after a few days....

It is what is in a B-Complex that changes the color of your urine.

https://pubmed.ncbi.nlm.nih.gov/31318024/

Better yet jut take a B-complex.

IF she complains her urine is "glowing" then she has enough Riboflavin aka Vitamin B-2.

I hope this is helpful but it is not medical advice.

Posterboy,


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Tracy66 Apprentice
5 hours ago, knitty kitty said:

Tracy66,

I'm concerned about the decline in your daughter's brain function!  

Celiac Disease causes malabsorption which results in malnutrition, vitamin and mineral deficiencies, which can have the same results, the decline in brain function your daughter exhibits.  I am not a doctor.  I have experienced severe vitamin and mineral deficiencies.   

Thiamine (Vitamin B1) deficiency can cause changes in brain function such as the ones you describe.  It's called Wernicke's Encephalopathy.  It's usually seen in alcoholism, which is why my doctors missed it in me.  When my doctors asked me if I drank alcohol, I explained alcohol makes me violently ill so I don't drink.  My doctors shrugged their shoulders and wrote me off as a hypochondriac.  My doctors had not recognized Wernicke's outside of alcoholism.  They were even more clueless about Celiac Disease.  

I'm a microbiologist.  I had learned about vitamins at university.  I researched and started supplementing with thiamine and the other B vitamins and minerals.  

Those things your daughter is experiencing could be due to Thiamine deficiency.  I had similar problems, ADHD, anxiety, problems understanding what was said to me, and more besides.  

 Your daughter improved slightly with inclusion of red meat in her diet.  Red meat is a good source of thiamine.  Thiamine is water soluble and can not be stored for long.  A deficiency can develop quickly if you're not getting enough thiamine.  

The best test for thiamine deficiency is the erythrocyte transketolase test.  

The treatment for thiamine deficiency is high dose Thiamine which is safe because thiamine has no toxicity.  An IV of high dose thiamine can be given by doctors or over the counter thiamine supplements can be used to correct a deficiency.

It's rare to have a single vitamin deficiency.  Deficiencies usually occur in several vitamins because they all work together.  Testing for vitamin deficiencies is part of proper follow up care for Celiacs.  

I want to express a sense of urgency because Wernicke's can progress to Korsakoff's syndrome which can cause permanent damage.

I'm not a doctor.  We can't give medical advice.  But I urge you to discuss this possibility with your doctor.  

I've found this site helpful.

http://www.hormonesmatter.com/thresholds-and-tipping-points-in-thiamine-deficiency/

 

Please keep us posted on your daughter's progress.  

Hope this helps

 

Knitty Kitty thank you! I have written the name of the test down. It is very concerning. Daughter has an app, first app with a new specialist, a devolpmental/behavioural Paediatrician this Monday. She is 13. I will definitely ask him to pursue this test. It must of been awful for you to have to pursue the issue of comprehension problems and other relating symptoms, and have doc shrugg you off. My daughter says cannot understand what her teachers are saying and if she does then she forgets it very quick. She forgets a lot of things said to her by anyone and also what she has done. She will not watch movies, read or listen to music at all. I think her motor function is ok. Her grades have fallen in the last 2 years. It's got to the stage where we have to say something using the least amount of words to her so that she understands what we are saying. She says her friends help her at school to get by, which is so lovely they care and I had no idea until she came to me all upset saying it started a couple of years ago and that its getting worse. I did think she wasnt listening and was trying to encourage her to listen. The positive Auditory Processing Disorder tests she had was thought to be the issue and also now ADHD is being considered. But now that Celiacs is possible and I can now see how it can cause these symptoms through vitamin esp thiamin deficiency I am definitely asking for this blood test and also a full vitamin blood test if that exists. Waiting for this biopsy Feb 18th, so have to keep eating gluten, but if in the meantime bloods do show deficiency then it would be much better for them to organise supplements she needs now. Thank you Knitty Kitty and thank you to Trents for your helpful information. I did think Celiac was an allergy and I thought it could cause autoimmune diseases, but I didn't know it was an autoimmune disease. I am much more on to this now knowing a lot of her symptoms are related to Celiacs. Only good thing is if my daughter can have relief from all these issues from diet and supplements then that's better than being medicated. She has in the past had fluoextine for severe anxiety and although it definitely helped it was a very last resort and I hated her being on such a drug.

Tracy66 Apprentice

Poster boy, thank you too! A B complex is a great idea!. It cannot hurt her and after learning more about Celiacs relating to her symptoms, I feel it's urgent to find out what vitamins she needs for supplements. I was going to wait for the biopsy to see what Gastroenterologist says but now I'm going to pursue this with her new Peadiatrician we see Monday and get the ball rolling with helping any deficiency. Thank you so much. 

Tracy66 Apprentice

I would just like to say I am so grateful I have joined this forum. It's my first time I have ever joined a forum. The help I have received in understanding the nature of Celiacs has been invaluable to me. Due to all of your information you have helped me realise that something can be done even before she is diagnosed.  Having tests for vitamin deficiencies in the meantime before a diagnosis can help her get the right supplements she will need now. Knowing what to ask for helps so much. Also now I undertand more on Celiacs and how much her symptoms relate.

Before I joined I had convinced myself the biopsy was more of an annoyance, and was overwhelmed by one more thing to pursue. I thought the egg allergy could have changed the blood results to a positive. But if all her symptoms are related to Celiacs, and diet and supplements can be the answer to most of her problems then I don't feel so overwhelmed with having to purse this. Thanks so much. Will keep posted.  

knitty kitty Grand Master

Tracy66,

I found one more article for you.

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

Check into the Autoimmune Paleo diet so you'll be prepared when given permission to go gluten free after all testing is done.  This is my favorite book for newbies.

https://www.thepaleomom.com/books/the-paleo-approach/

And, remember, Celiac Disease is genetic.  All first degree relatives should be tested.  (Parents, daughter, siblings, etc.) So get tested yourself, too, Tracy! 

Hope this helps! 

trents Grand Master
(edited)

Tracy66, also be aware that serum vitamin and mineral level testing may not tell the whole story since they don't measure what is actually getting to the tissues. Deficiencies can also be masked in some cases by supplements. A case in point is a B12 deficiency being masked by folate supplementation. Really, it can be better to observe the effects on the body and on behavior when it comes to diagnosing deficiencies but most docs are not well versed in this kind of diagnosis and it is just easier for them to send a sample off to a lab and be done with it. When it doubt, supplement. The water soluble vitamins are safe so there isn't much concern for overdosing. Be more careful with fat soluble vitamins and with minerals. 

Another case in point is calcium. Serum calcium levels typically remain stable even when a diet is deficient in calcium since the body just takes it from the bones.

Edited by trents
Tracy66 Apprentice

Trents I see what your saying about trying out the water soluble vitamins as they can't turn toxic and behaviour can be determined for success of supplement.. Thanks for that. Her Dad and I have just now decided to go out and get get her a good B Complex vitamin like Poster Boy suggested. I will also ask for the specific thiamin test Knitty Kitty suggested on Monday at Peads.

Also interesting you told me Celiacs is actually an autoimmune disease. I had endometriosis which can be linked to autoimmune diseases. It caused antiphospholipid syndrome for me which is an auto immune disease.. Interestingly after years of medical intervention endometriosis kept coming back aggressively and antiphoslolips remained.. 8 years of IVF on top of that and no pregnancy. I was to be on heparin if I ever did get pregnant due to the antiphospholipid disease.

I saw a Chinese medicine doctor. In one year of her therapy she reversed both the diseases which showed up on my annual laproscopy for Endometriosis and also showed up as negative on bloods for the antiphosoholiid syndrome. Doctor asked what had changed in that year. He dismissed the fact that Chinese medicine had anything to do with either of the results. I was pregnant with our daughter straight after that. The heamatology doctor told me there was no need for heparin as "for some reason" I am now negative. 

Knitty Kitty the Gastroenterologist did say for direct relatives to be tested. I was going to wait until a definifite diagnosis from Jade our daughter. But now I will book myself in for a test, her Dad said he will do one too. Monday will be ringing up for blood test.

I am also thinking of speaking to the Chinese medicine doctor to see if she can help with Celiacs if diagnosed. I cannot say enough how much she helped, particularly the auto immune disease that I had. If any of you are interested in giving it a try. It was accupuncture and Chinese herbs made up looking like it came out of a forest that I had to cook.

 

Tracy66 Apprentice
1 hour ago, knitty kitty said:

Tracy66,

I found one more article for you.

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

 

Check into the Autoimmune Paleo diet so you'll be prepared when given permission to go gluten free after all testing is done.  This is my favorite book for newbies.

https://www.thepaleomom.com/books/the-paleo-approach/

And, remember, Celiac Disease is genetic.  All first degree relatives should be tested.  (Parents, daughter, siblings, etc.) So get tested yourself, too, Tracy! 

Hope this helps! 

Thanks for the links and advice. 

trents Grand Master

Tracy66, just be careful and get vitamins and supplements that are gluten free. Not sure where you live but Costco is a great source for gluten-free vitamins and supplements through their Nature Made line if your are in the USA and near one.

Tracy66 Apprentice

Thanks Trents. We are in Melbourne so have Costco. Hubby has already gone to get a B Complex and come back with Cenovis. It says no added gluten so hopefully ok. 

knitty kitty Grand Master
(edited)

Tracy,

Wait until after the test for vitamins on Monday.  If you start supplementing now, you will invalidate the tests.  The tests will measure the supplements in her system.

You should talk to your doctor before administering thiamine yourself.  The doctor may wish to administer an IV of high dose thiamine and witness the results.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354137/

High-dose Parenteral Thiamine in Treatment of Wernicke’s Encephalopathy: Case Series and Review of the Literature

 

1 hour ago, Tracy66 said:

Thanks Trents. We are in Melbourne so have Costco. Hubby has already gone to get a B Complex and come back with Cenovis. It says no added gluten so hopefully ok. 

 

Edited by knitty kitty
Add link
Tracy66 Apprentice

Thanks Knitty Kitty. Hubby went out to get a B Complex vitamin already and we have given her a tablet. But its only one. Can hold off to Monday now and tell Paed what she has had.

Also Trents we are in Melbourne, Australia. Hubby pointed out there is also a Melbourne in USA. But we still have Costco in Australia. It's a good store.

knitty kitty Grand Master

Fingers crossed...

Do keep us posted on your daughter's progress.

😺

Tracy66 Apprentice
32 minutes ago, knitty kitty said:

Fingers crossed...

Do keep us posted on your daughter's progress.

😺

Will do. Will post back in after biopsy when we have results. Thanks a million everyone for your help and support.

GFinDC Veteran

Hi Tracy,

Here is an article listing the tests they can do for celiac disease.  The usual screening test is the ttg IgA.  But there are other tests for different types of antibodies also.  Some people's immune systems don't even make IgA antibodies so it is better to get all the different types of antibodies tested.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Allergies are an IgE reaction, not IgA or IgG like celiac is.

The antibody tests all have result ranges that vary by each lab.  So if you get her test results make sure and get the lab ranges too.

Tracy66 Apprentice

Thank you GFinDC for the link. It describes the testing well.

Also I remembered allergies were Ig something that's why initially I thought it could alter the test result., Of course now you mention it allergies are IgE not IgA.  Thank you for clearing that up for me. Also I have since learned that Celiacs is an auto immune disease which, until I joined this forum was thinking it was an allergy. 

I am very intetrsted in getting the test results of all her bloods now. Will see if GP will send them to me,as the next time I'm seeing Gastroenterologist at the children's hospital will be when she gets her biopsy. Thanks again for posting helpful link and info.

Placey09 Newbie
19 hours ago, Posterboy said:

Tracy,

Try have her take some Riboflavin....it has been shown to help Anemia.

It will turn her urine Yellow after a few days....

It is what is in a B-Complex that changes the color of your urine.

https://pubmed.ncbi.nlm.nih.gov/31318024/

Better yet jut take a B-complex.

IF she complains her urine is "glowing" then she has enough Riboflavin aka Vitamin B-2.

I hope this is helpful but it is not medical advice.

Posterboy,

Lots of sound advice .The only caution I want to express is with taking a B- complex vitamin. Its better to have your B levels tested guest before taking, especially in young developing children as too much can be harmful. As an adult ( before being diagnosed with Celiacs) I thought a B- complex was a good idea as I was feeling tired all the time. The headaches and stomach aches from taking that vitamin were awful- I never had headaches before. I stopped and shared that with my Dr. She told me never to do that again, with any vitamin really as it could be harmful - even with Vitamin B. She tested my levels and I was only low in B-12. Her and my neurologist told me to only take a B-12 without any other vitamins or minerals added and the kind that is absorbed under the tongue. Since then no headaches, no stomach aches. Bottom line not all vitamins are treated equal and more is not always best.

plumbago Experienced

It is always best to get a professional opinion before taking medications and supplements recommended on the Internet. We should be mindful of the things we put into our mouths, realizing there may be a cost that the kidneys or liver may (may) have to pay. Sound thinking, @Placey.

GFinDC Veteran
5 hours ago, Tracy66 said:

Thank you GFinDC for the link. It describes the testing well.

Also I remembered allergies were Ig something that's why initially I thought it could alter the test result., Of course now you mention it allergies are IgE not IgA.  Thank you for clearing that up for me. Also I have since learned that Celiacs is an auto immune disease which, until I joined this forum was thinking it was an allergy. 

I am very interested in getting the test results of all her bloods now. Will see if GP will send them to me, as the next time I'm seeing Gastroenterologist at the children's hospital will be when she gets her biopsy. Thanks again for posting helpful link and info.

You are welcome Tracy.  You are not alone there, many people think that celiac is an allergy.  Sometimes people with celiac will tell their server at a restaurant that they have a gluten allergy.  That is far easier for people to understand than an auto-immune disease, especially people with no medical background like most restaurant workers.

The link below talks about supplements for celiacs.  I've had problems keeping my vitamin D levels up in the past.  I take a vitamin/mineral combo that includes boron and calcium and vitamin D.  Boron is important because it increases the length of time vitamin D is retained in the body.  It also helps in the storage of calcium in bones.  Your doctor can give advice based on the testing they do.

The good news is if it is celiac causing the issues, she has a fine chance of fully recovering.  It may take some time, but once her intestine heals and can absorb nutrients efficiently again, her body can recover.  Healing the gut can take months though as the immune system is slow about giving up a fight.  And any tiny bit of gluten can spark an immune system flare.

https://nationalceliac.org/celiac-disease-questions/blood-tests-and-supplements/

 

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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