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Glutened by Thyroid Medications? Anyne Else? What brands are everyone taking?


Tigercat17

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Tigercat17 Enthusiast

Hi All!

I have really been struggling this last year. I have been dealing with acid reflex for almost a year now. I tried the acid reflux meds and I got really sick and they just made it worse. So, I've been on a very low acid diet (GERD Diet) and trying to keep it under control. But I really think I'm getting glutened by my thyroid meds. I don't take any other vitamins or supplements. I have been only juicing fresh fruits and veggies. Has anyone else had problems with these? I've been gluten free for almost 8 years now and was feeling great and then my acid reflux came back about a year ago. I haven't been out to eat in a year so I know it's not that and I have a gluten free kitchen. I double checked everything I eat. I keep a food journal. I know I am very sensitive and I don't eat a lot of gluten free products. I mainly stick with whole foods. Also, back in June I did figure out I was getting glutened by Heniz Sweet Relish. All the sudden it wasn't gluten free anymore so I did stop that, but that was months ago and I'm still not 100%. :( And so then I called everything that I have been taking just to be sure it's still gluten free because products change.

So, has anyone else had problems with their thyroid meds? And what brands are everyone taking? I think I'm going to have to change my meds just to see if I feel better. I called my doctor today but they haven't called back yet. So, I'm doing some research before I change... I year ago I was taking Levothyroxine (Lannett Brand) and I started to have acid reflux about a year after taking it. So then I switched to Levothyroxine (Mylan Brand). I didn't get better after a month of taking it so I called my doctor and they changed me to Levoxyl. I've been taking that for about the last 6 months.. My throat is better than it was but it's still not gone and I am so careful with my diet. I don't even eat salad dressing anymore. :( So I'm thinking I might be getting some CC from the Levoxyl. It has to be that, because I'm so strict it's crazy and driving me a little nuts. I used to be able to eat out once a month and I haven't been able to do that. I'm really getting down and so frustrated with this disease. :( 

Also, I have been asking my pharmacist to clean the trays for me when they count my meds since I'm very sensitive.  I even got new pots and pans just to make sure I wasn't getting cc from my old pans. I've been trying anything I can think of.

Can anyone share what brands they are taking so at least I have a starting point? This is such a battle.. I would really appreciate it. Thank you!


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kareng Grand Master

Very few meds actually contain gluten. 

Its possible the acid reflux has nothing to do with gluten.  Many people, who do not have Celiac, have reflux.

Tigercat17 Enthusiast

I'm having other symptoms too. Bloated, my stomach hurts, not sleeping well, tried all the time.. I feel like I have trouble concentrating.  And I get cold sores after I get glutened... night sweats when I get a lot of it. Since I've been celiac for almost 8 years I know my glutney symptoms well. :( 

sdlane Rookie

Hi Tiger,  

Yes, your thyroid meds may contain gluten in the filler, not the actual medicinal component itself.  Pre-Celiac diagnosis, I took Synthroid 225mg and Cytomel 25mg.  The Synthroid brand name does contain gluten in the filler, whereas the Cytomel does not.  The filler is the actual white (or colored) substance that you would call the "pill" itself.  It is combined with the medicine to form the actual pill.  With my new Celiac diagnosis, the first thing I did was have my pharmacist check the ingredients for all my meds.  Only the Synthroid had gluten in the filler.  So, my doctor switched me to Tirosint (which is a non-guten gel cap and the meds are in water) Open Original Shared Link.  The Cytomel is fine.  Since it sounds like you are taking a generic, ask your pharmacist to check the ingredient list from the manufacturer.  I have Graves and Celiac now...like I really need two autoimmune diseases.  lol  I had my thyroid (7 1/2 inches long!!), a parathyroid and three lymph nodes removed 5 years ago.  After leaving my small town doctor for a real Endo at UC San Francisco, I'm back to feeling a lot more like myself.  Well, as far as not having a thyroid is concerned. lol  On a side note, depending on how sensitive you are, there can be gluten in your toothpaste, sun screen, shampoo, conditioner, deodorant, etc, so make sure you research that stuff too.  Crazy, huh?  Best wishes to you in staying healthy! :)  Stacy

sdlane Rookie

Me again...a lot of doctors don't know much about, or like, Cytomel.  Make sure your doctor adjusts your thyroid meds based on your symptoms, not just your labs being "in range."  Range means nothing when you feel like crap.  I keep my T4 high and my T3 in the middle...that's when I feel the best and not all lethargic, with symptoms as you were describing above, save for the acid reflux.  I assume you still have a thyroid, which may make finding your perfect range a little more challenging.  Do you have autoimmune thyroid disease?  The best advice I can give you in that regard is don't settle for a doctor not listening to you.  And go to an Endocrinologist, not a GP who "thinks" they know everything about thyroid function.  There is a reason you have an extra four years of medical study to specialize in dealing with them!  lol

cyclinglady Grand Master

I take Armour Thyroid and it is gluten free.

 I can relate to your frustration.  I got glutened badly last summer.  Was it just a one time exposure that triggered my antibodies to go higher than when I was initially diagnosed (tested six weeks after gluten exposure)?  I have no clue as to what glutened me because it happened before I went on vacation and I am careful not to eat out before a trip.  I am guessing a prescription drug or a product that was labeled gluten free.  I have yet to test either one.  I am too afraid to get ill again as it took me 3 months to completely recover (became lactose intolerant again and developed a nice case of hives and rashes controlled by antihistamines).  My prescription drug was generic, so it is not on the gluten-free list.  I can live without it, but not my thyroid replacement, which is gluten-free as I stated earlier.  

This might help, but you probably have already checked these lists:

Open Original Shared Link

Open Original Shared Link

 

StephanieL Enthusiast

Mylan is gluten-free, Lannett is also on the list of gluten-free levo.


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Tigercat17 Enthusiast
1 hour ago, sdlane said:

Me again...a lot of doctors don't know much about, or like, Cytomel.  Make sure your doctor adjusts your thyroid meds based on your symptoms, not just your labs being "in range."  Range means nothing when you feel like crap.  I keep my T4 high and my T3 in the middle...that's when I feel the best and not all lethargic, with symptoms as you were describing above, save for the acid reflux.  I assume you still have a thyroid, which may make finding your perfect range a little more challenging.  Do you have autoimmune thyroid disease?  The best advice I can give you in that regard is don't settle for a doctor not listening to you.  And go to an Endocrinologist, not a GP who "thinks" they know everything about thyroid function.  There is a reason you have an extra four years of medical study to specialize in dealing with them!  lol

Thanks sdlane! Lots of good information. I don't have a thyroid at all. I had thyroid cancer over 8 years ago, so I'm really dependent on these drugs. I'll talk to my doctor tomorrow and see what they want to do. I know I'm getting some CC and I have taken out so many things from my diet to test and see if I feel better, but I feel like crap and I know this is not normal. I was feeling amazing a year ago. It's so frustrating.. This is the only item in my diet that I can't stop taking to see if I'll feel better like food products. I'm really hoping that feel better soon. My hair and nails are a lot thinner than usual, too. So I'm thinking I should probably get my T3 and T4 levels checked too. Thank you so much! :)

kareng Grand Master

Interesting article about gluten in meds and how to see if it's in your med

Open Original Shared Link

"A recent search of medications listed on a National Library of Medicine database, managed in conjunction with the National Institute of Health, showed that there were 8,379 individual products or dosage forms that contained the word “starch.” Searching specifically for the word corn reveals 6,518 records, potato reveals 2,934 records, tapioca reveals 17 records while the word wheat reveals 11 records. The total adds up to more than the 8,379 records because many products have more than one starch contained within the product. This database is called Pillbox, and can be accessed Open Original Shared Link."
 

Oop!  Looks like Cycles already posted this! :)

icelandgirl Proficient

Hi Tigercat,

I'm sorry to hear that you're not feeling well... ((((hugs)))).

Have you had your antibodies checked to see if you're getting glutened?  That may be the place to start.  I do take Levoxyl without issues.  My antibodies came back great last summer.  When I was on generics I had some issues, but going to the name brand stabilized my thyroid. 

I hope that you get some answers and feel better soon!

mbr22m Rookie

Have you heard of Tirosint? I was at a celiac convention awhile back and they were handing out info on it. I took it for my mom who has hypothyroidism.  Open Original Shared Link

mbr22m Rookie

Sorry!! Just read sdlane's response! I'm on my mobile and can't read that well on it!:wacko:

manasota Explorer

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

Tigercat17 Enthusiast
44 minutes ago, manasota said:

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

Thank you Manasota! That is so helpful! I haven't called them since Sept. and I didn't think to ask them about shared lines...  but wow! That would explain a lot! I can't tolerate anything made on shared lines. I am that sensitive. I did talk to my doctor today and they are so nice and helpful.. They're going to put me back on the Levothyroxine (Lannett brand) since I was talking it before I started having celiac symptoms. I was taking it for two years without problems. I'll start it tomorrow. And they said if I'm still having problems they'll switch me to Tirosint. I did call them today and it sounds like it would be perfect for me. We'll see how I feel with the Lannett first since my doctor already called it in. All of Lannett's medications are gluten free so I thought it would good to give it another chance again.

And yes, I totally agree about Pfizer. This isn't the first time I took medication from them and felt like I got glutened. But it was only sometime I needed for a week so I recovered, but this thyroid med is something we all have to take daily and if there's just a little CC it will really mess up your system.

Thanks again! :)

Tigercat17 Enthusiast
1 hour ago, icelandgirl said:

Hi Tigercat,

I'm sorry to hear that you're not feeling well... ((((hugs)))).

Have you had your antibodies checked to see if you're getting glutened?  That may be the place to start.  I do take Levoxyl without issues.  My antibodies came back great last summer.  When I was on generics I had some issues, but going to the name brand stabilized my thyroid. 

I hope that you get some answers and feel better soon!

HI Icelandgirl! awww... thanks for the hugs.. I have gotten my antibodies checked 8 months but not lately. And they were 11... But I was feeling horrible at that time. I think if I'm only getting CC my antibodies don't show anything since I've been gluten free for 8 years.

Thank you! I'll have to get them rechecked this week. But I am changing my thyroid medicine back to Lannett brand. I wonder if the Levoxyl is made in different facilities. Maybe some plants have more of a chance in CC than others? I know you are super sensitive too, so I'm just wondering, but we'll soon see how I do on the different brand. But this has been going on for too long. I'll keep you posted. :)

icelandgirl Proficient

You are most welcome for the hug...I could use one too most of the time. :)

It stinks to not feel well and be trying to figure out what's going on.  Please let me know how you do on the med change.  Also if you try tirosint.   I'm interested in that as it has so few ingredients!  Remember to get all of your levels checked 6-8 weeks after.  The effectiveness of thyroid medications varies.  Make sure to get your levels to a good spot and see how the rest of you feels.

Good luck! 

cyclinglady Grand Master
7 hours ago, manasota said:

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

Alas, this bill has not passed yet!   From what I have read....fat chance!  ?

Open Original Shared Link

For years I paid cash for Armour Thyroid.  I would get a 3 month supply.  It is/was less than $10 a month which was the cost of my monthly co-pay.  

StephanieL Enthusiast

This is one of those times you have to look at the odds- 

1) MOST meds are not filled with gluten

2) IF a company makes something with gluten, there may be different lines.

3) If not, they typically are going to have to scrub lines BETWEEN batches of drugs. You can not run the risk of giving someone a medication they may be allergic to or that will adversely harm them.

I am not saying there is not a remote possibility of x-con but truthfully I would look at other sources before I would dump a whole class of drugs as all being contaminated and not useable!

flutegal64 Newbie

Drugs can be frustrating!  Your pharmacist should be able to call the manufacture.  However, recently I've noticed the drug companies are being very mysterious in their responses.  At best they will say there are no gluten containing ingredients.
I've gotten sick on more and more medications recently even when they say they don't contain gluten (but I get a gluten reaction).
It's hard too because if it's an off time (in the evening or on a weekend) sometimes you have to wait for a response.
This is an issue I wish the government would address- drug companies should be required to label their drugs if they contain gluten.
 

suelynn Newbie

I too am struggling with something. I have had thyroid disease now for may years between graves and hashimotos..have had chronic cough off and on for 10 years. I am gluten free and try to eat whole foods, but slip in pepsi and some sugar.i feel like its tied to thyroid, but drs don't want to hear that. light bulb went off recently and I think its acid reflux back into my throat hence the cough. trying to eliminate foods as I feel that acid reflux is from a food and not just something we get and live with and take meds for it. anyone else have cough..I mean a cough that is sleep/social/work disruptive at times. And people look at you like you have the plague

HealthDetective Newbie
59 minutes ago, suelynn said:

I too am struggling with something. I have had thyroid disease now for may years between graves and hashimotos..have had chronic cough off and on for 10 years. I am gluten free and try to eat whole foods, but slip in pepsi and some sugar.i feel like its tied to thyroid, but drs don't want to hear that. light bulb went off recently and I think its acid reflux back into my throat hence the cough. trying to eliminate foods as I feel that acid reflux is from a food and not just something we get and live with and take meds for it. anyone else have cough..I mean a cough that is sleep/social/work disruptive at times. And people look at you like you have the plague

Hi there, my mom had the same issue almost exactly. Have you ever had food allergy testing done? My mom had the exact same issue. Cronic cough. Almost debilitating. Was sent for all kinds of X-rays, put on all kinds of antibiotics, basically the docs told her nothing wrong. She was becoming depressed. Couldn't hold a conversation... Phone call, always a crazy coughing fit. Turned out a naturopath finally helped her and it was a dairy allergy. Stopped eating dairy and problem solved. I hope this can help you. Take care 

StephanieL Enthusiast
14 hours ago, HealthDetective said:

 Turned out a naturopath finally helped her and it was a dairy allergy. Stopped eating dairy and problem solved. I hope this can help you. Take care 

Naturopaths do not do any allergy testing that is documented as being useful in any way. If it was an allergy, a board certified allergist would be the person to see who would do IgE testing for an allergy. 

Nikki2777 Community Regular

I take Mylan Levothyroxine with no issues.

I'm no expert and certainly not as knowledgeable as others that have responded, but if you are juicing, couldn't the high acidity of the fruits and some of the vegetables be causing some problems?  I love fruit, but I have to watch out and limit my intake because too much just upsets my stomach. 

cyclinglady Grand Master
26 minutes ago, Nikki2777 said:

I take Mylan Levothyroxine with no issues.

I'm no expert and certainly not as knowledgeable as others that have responded, but if you are juicing, couldn't the high acidity of the fruits and some of the vegetables be causing some problems?  I love fruit, but I have to watch out and limit my intake because too much just upsets my stomach. 

I agree about the juice!  I think eating veggies and fruit in the whole form is best!  Seriously, how many oranges can you eat  in one sitting before your body tells you enough?  Does not happen as fast with Juice.  My family rarely has juice.  I mean rarely.........

  • 1 month later...
suelynn Newbie
On ‎3‎/‎1‎/‎2016 at 5:14 PM, kareng said:

Very few meds actually contain gluten. 

Its possible the acid reflux has nothing to do with gluten.  Many people, who do not have Celiac, have reflux.

I have struggled with acid reflux..the silent type that causes a chronic and annoying cough. I have gone through allergy testing, my great functional Doc was stumped..thought allergies..I am almost 100 % sure its caused from my thyroid. I had graves for 7 years, then found this great  dr, am now being treated for hashimotos, but it flip flops back and forth, so right now too much cytomel and it cause this cough, and I feel like its backing up into my throat. So I taper off my meds a bit to slow down the digestion  and all the stuff that being hyperthyroid can cause. I am also gluten free, and have eaten better now than I have the past 10 years. Mostly whole foods, with a few cheats of sugar here and there.It is such a constant struggle just trying to eat gluten free and then throw the thyroid thing in. 

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      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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