Newly diagnosed

[Bill1991]

Hi I have just recently been diagnosed with celiac. Blood test and biopsy confirmed. I've been reading up and getting mixed information. I have been gluten free for 2 weeks now. I've been a vegetarian since I was 2 so when it comes to cooking I have always done my own food and not eaten out much due to vegetarian  stuff possibly being cooked on same grill as meats . Im hopefully not cross contaminating gluten in my household at the moment. I know it's a long process when do the symptoms start to go. Im still getting headaches, bad stomach, and when I wake up vertigo kicks straight in and last throughout the day and sinus ear fullness ( I don't expect them to go over night just feel i maybe doing something wrong still) .I read about the toothpaste I'm using sensodyne pro enamel and apparently has gluten in there? On the coeliac.co.uk the website states you wouldn't get glutened from toothpaste as you wouldn't digest enough of it to cause issue. My partner is not on a gluten free diet. Im using my own butters etc and eating a good gluten free diet. Im still using the same utensils ( there cleaned from gluten) so I'm doing the best to my knowledge and done a lot of research. I stumbled across this website so hopefully can get some pointers.  
 

thanks any advice would be appreciated 

[knitty kitty]

Welcome to the forum!

Do keep in mind that Celiac Disease results in malnutrition because the damage to the small intestine prevents absorption of vitamins and minerals.  

Do discuss with your doctor or nutritionist the benefits of supplementing with a B Complex vitamin.  Gluten containing products are required by law to be enriched with vitamins lost in processing.  When we go gluten free, we need another source of those vitamins.  Good sources of B vitamins are meats and liver, some beans and a few vegetables.  

The vertigo can be a symptom of Vitamin D or B12 deficiency.  Vegetarians are frequently low in B12.  

Supplementing while we're healing is beneficial as our bodies need the B vitamins to repair itself and function properly.  

[trents]

Bill, have you considered that you may have other food intolerances and allergies in addition to celiac disease? This is common among celiacs. The ear/sinus problem you have and the headaches made me think of that. Having celiac disease means your immune system is dysfunctional and is interpreting things as invaders that are not. That tendency typically expands beyond gluten over time. You may want to look at Alcat food sensitivity testing to identify some culprits. Peanuts is on my list now for migraine triggers, even though I ate them for many years without issue. Also, are you still eating oats? Many celiacs react to oats in a similar way as they do to gluten.

[Bill1991]

7 hours ago, knitty kitty said:

Welcome to the forum!

Do keep in mind that Celiac Disease results in malnutrition because the damage to the small intestine prevents absorption of vitamins and minerals.  

Do discuss with your doctor or nutritionist the benefits of supplementing with a B Complex vitamin.  Gluten containing products are required by law to be enriched with vitamins lost in processing.  When we go gluten free, we need another source of those vitamins.  Good sources of B vitamins are meats and liver, some beans and a few vegetables.  

The vertigo can be a symptom of Vitamin D or B12 deficiency.  Vegetarians are frequently low in B12.  

Supplementing while we're healing is beneficial as our bodies need the B vitamins to repair itself and function properly.  

Hi thanks for the reply and info I will bring that up to the doc. how long did it take for your symptoms to clear up and did you suffer vertigo?

[Bill1991]

1 hour ago, trents said:

Bill, have you considered that you may have other food intolerances and allergies in addition to celiac disease? This is common among celiacs. The ear/sinus problem you have and the headaches made me think of that. Having celiac disease means your immune system is dysfunctional and is interpreting things as invaders that are not. That tendency typically expands beyond gluten over time. You may want to look at Alcat food sensitivity testing to identify some culprits. Peanuts is on my list now for migraine triggers, even though I ate them for many years without issue. Also, are you still eating oats? Many celiacs react to oats in a similar way as they do to gluten.

Hi thanks for the reply Will the other food intolerances go once your gut starts to heal down the line and I will have to order one of those food sensitivity kits. I bought some gluten free oats do some still react to those to. Thanks 

[trents]

The "other" food intolerances/sensitivities do not normally go away. Once the immune system triggers are switched on they are they on. The one exception to that would be lactose intolerance which has a different mechanism. And since you are a vegetarian that doesn't apply anyway. You may also find that with some food sensitivities you may be able to eat limited amounts on an occasional basis without issue, e.g., that there is a threshold of intolerance/sensitivity.

With oats, it's not necessarily a cross-contamination issue but the oat protein itself being similar in structure to gluten.

With the Alcat food sensitivity testing you may feel overwhelmed when you get the results. It may turn up that you are reacting to dozens of foods. But the results will rank them according to the severity of the reaction. So, look at eliminating the worst offenders and be willing to live with the rest. After all, you have to eat to stay alive. Food sensitivity testing can yield some false positives so you must always compare the test results with your real life experience.

I echo what knitty kitty said about B12. It is nearly impossible to get adequate B12 from a vegetarian diet without supplementation. The only known plant-based source of B12 are a fermented bean curd. Fortunately, there are many "vegan" supplement products available today.

Edited May 26, 2022 by trents

[Scott Adams]

On 5/26/2022 at 7:46 AM, Bill1991 said:

Hi thanks for the reply and info I will bring that up to the doc. how long did it take for your symptoms to clear up and did you suffer vertigo?

I suffered from vertigo, which was so bad around the time of my diagnosis that I went to the emergency room a couple of times thinking that I was having a stroke or heart attack. I also had panic attacks, and looking back, the vertigo symptoms are what seemed to set off the panic attacks.

The good news, in my case at least, was that those symptoms went a way in the first ~3-6 months after going gluten-free. As with most celiacs, my transition to a gluten-free diet was not a perfect one, so it probably took me longer to get past these symptoms than it could have, had I had more knowledge about the gluten-free diet and hidden sources of gluten (especially if you eat at restaurants or outside your home).

[Russ H]

3 hours ago, Scott Adams said:

I suffered from vertigo, which was so bad around the time of my diagnosis that I went to the emergency room a couple of times thinking that I was having a stroke or heart attack. I also had panic attacks, and looking back, the vertigo symptoms are what seemed to set of the panic attacks.

The good news, in my case at least, was that those symptoms went a way in the first ~3-6 months after going gluten-free. As with most celiacs, my transition to a gluten-free diet was not a perfect one, so it probably took me longer to get past these symptoms than it could have, had I had more knowledge about the gluten-free diet and hidden sources of gluten (especially if you eat at restaurants or outside your home).

I struggled with the diet in the beginning, too.

For me:

2 weeks: noticed improving bowel movements

4 weeks: fatty stools begin to go, strong body odour & bad breath disappear

3 months: bloating, burping and reflux suddenly resolve over a couple of days, itchy skin wheals disappear, fatigue improves.

6 months: psychiatric symptoms begin to resolve (improved memory, and paranoia and confusion start to go), no more chilblains, heart arrhythmia disappears, Achilles' tendonitis disappears

9 months: memory and mood much better, beginning to put muscle on, thickened sore red skin on knees and elbows has gone, bowel habits pretty much normal, fatigue has gone

Not quite back to normal yet, but the best I have felt for 30 years.

[Kate333]

You may well still be getting cross-contaminated by sharing grill, plates, utensils at home, esp. since your partner is not gluten-free.  (Also, if you kiss your partner right after he eats gluten meals, that could also a possible source of gluten exposure.)    And dining out, even occasionally at restaurants touting gluten-free menus, or eating any processed/packaged foods, even those labeled gluten-free, poses a big risk of possible gluten exposure.   It is not enough to just reduce gluten in a diet; diet must be 100 percent gluten-free.   Perhaps safer to avoid eating out at all and eat only natural, fresh foods that you buy and cook for the first year.  

2 weeks is not nearly enough time for your body/gut to heal on the gluten-free diet.  While the gut begins to heal rapidly on gluten-free diet and some folks notice improvement in symptoms quickly, many others can take longer, up to 2 years to fully heal and see results.   But that is often because people are not fully compliant with a strict gluten-free diet. 

I suggest you ask your doctor for follow-up TTG/IgA blood tests (after 3-6 months) to assess your progress on the gluten-free diet.  If a dramatic drop in gluten antibodies is not shown in the blood test report(s), that is a red flag that you are still getting regularly exposed to gluten and further lifestyle/diet modifications need to be made.   

Best of luck on your healing journey!

[Russ H]

On 5/26/2022 at 8:01 AM, Bill1991 said:

I read about the toothpaste I'm using sensodyne pro enamel and apparently has gluten in there?

I use the same toothpaste, and it has no gluten containing ingredients. What GSK say is that because they do not test it and because their suppliers do not guarantee no cross contamination, they cannot state that it is gluten-free.

https://www.sensodyne.com/en-us/frequently-asked-questions/

[knitty kitty]

22 hours ago, Bill1991 said:

Hi thanks for the reply and info I will bring that up to the doc. how long did it take for your symptoms to clear up and did you suffer vertigo?

Yes, I suffered vertigo.  I found Vitamin D resolved it within a few weeks, but Thiamine Vitamin B1 and B12 helps as well.  Reducing caffeine helps, too.  

Are you keeping a food diary?  It can help pinpoint symptoms with certain foods.  

I found high histamine foods would trigger reactions, but avoiding them for a while was helpful in calming my system. 

I suspect that high histamine foods are behind the increase in food sensitivity and supposed allergies.  Our bodies can only deal with a certain amount of histamine at a time.  When we surpass that amount, our systems can't deal with all the histamine and we get symptoms.  As our bodies heal, they're better able to deal with histamines from foods and our reactions dissipate.  So save your money on allergy testing.

I followed the Autoimmune Protocol Diet (a Paleo diet, but there is a Vegetarian version, too.  Dr. Sarah Ballantyne developed this diet for her-Celiac-self and her Celiac children.  It's been scientifically proven to promote healing in Celiac people).  I chose low histamine foods.  Most high histamine foods are not allowed on the AIP diet.  High histamine foods include highly processed foods and fermented foods.

Hope this helps! 

[Bill1991]

Hi thanks everyone for replying and I will take on board what you guys have said great forum for help and information. I've been keeping a food diary for last couple days trying to eliminate the cause of ear fullness perhaps dairy? As I eat quite a lot of that. Thanks everyone again

[Bill1991]

14 minutes ago, Bill1991 said:

Hi thanks everyone for replying and I will take on board what you guys have said great forum for help and information. I've been keeping a food diary for last couple days trying to eliminate the cause of ear fullness perhaps dairy? As I eat quite a lot of that. Thanks everyone again

Also I clench down in my jaw quite often due to stress/ axienty and when concentrating. ( ended up with a bucks exosotosis which has to be removed ) I had an impression made and bought a night guard from the dentist he said was bruxism. TMJ/TMD he didn't say nothing about that to me but was wondering if anyone knows wether this can cause dizziness ear fullness I done a little research but I don't seem to have problem closing opening the jaw feels a little achy from time to time and wether clenching on your jaw or tmd/tmj is a symptom of celiac. 
 

thanks

[Scott Adams]

I don't recall seeing TMJ/TMD linked directly to celiac disease in research studies, however, my mother suffered from severe TMJ for decades. She also found out shortly after I was diagnosed that she also has celiac disease. Her TMJ symptoms improved greatly after a few years on a gluten-free diet, but have not completely gone away.