How long will it be before I will be in no pain

[Carmen22]

I've been struggling for the last 2 years to even live cause I've been in so much pain. I just got diagnosed with celiac one week ago. I did a lot of research about hidden gluten, no diary, no nuts, no eggs. I try to eat as clean as possible. I do eat rice cakes as processed food and gluten-free oatmeal (I got tested for this as well it was a little but higher but not much). I also am heavily allergic to almonds and egg yolks. Eating is really hard because I have really bad acid-reflux, nausea and stomach cramps and it is killing me. I also have so much throat pain, this started in august of 2022 and I got a tonsillectomy in November of 2022. My throat has still not healed. I am just so hopeless because I used to sing and I was going to go to music school. I tried for a little beginning this year on the guitar but everything got worse again. Now I'm trying my best to keep things clean, but it is so hard because I still live at home with my family. They really do their best, but there is still gluten products everywhere around and I am so afraid. I feel like I'll never be able to live again. I probably had celiac for a long time because I had belly bloating for a really long time before it got worse, like 5 year prior. I know I cannot give up cause I do not want to hurt the people I love, but I am just in so much pain that I rather not exist. I see post of people that take 2 years to recover, but I cannot take another 2 years, I would not last. I also saw a forum where someone said a younger person would recover faster, I am 19 so I hope that's the case. I am also taking probiotics and other tablets for digestion. I do not want to be on anti acids again because they made me so sick. I've tried pantropezol, omeprazole, cimitedine (I am not sure if these are right names cause I am dutch) and many others. Does anyone have tips to at least reduce the acid reflux, pain and to heal my throat? 

[Carmen22]

also forgot to mentions, vitamins also got tested. Have an deficiency and taking supplements for absorption 

[Scott Adams]

Welcome to the forum! 

The good news is that once you eliminate all gluten you should start feel better within days to weeks, but everyone is different so it can be hard to know for sure how quickly you will recover. The improvement should be slow but steady, and the younger you are the faster it should occur. 

Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure (even if the oats are labelled gluten-free). You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute.

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. I could not eat chicken eggs for years after my diagnosis, but I could eat duck eggs.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

 

 

PS -- You may want to take vitamin/mineral supplements.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.  

 

 

[trents]

Welcome to the forum, Carmen22! The two years of healing time you reference speaks of complete healing. Normally, those adhering to a strict gluten free diet start to feel much better well before then. You are only one week into it so if you are truly eating gluten free you should start to feel better soon.

I, too, suffer from GERD. If at all possible, avoid taking proton pump inhibitors, acid blockers and antacids for your GERD. Taking those things changes the pH in your gut and reduces the efficiency of nutrient absorption. If you must take something for the GERD, try TUMS but only as needed. There are some practical things you can try that usually help with GERD. There are foods you should avoid that tend to aggravate GERD: https://www.healthline.com/health/gerd/foods-to-avoid and here are some that help heal it: 

https://www.hopkinsmedicine.org/health/wellness-and-prevention/gerd-diet-foods-that-help-with-acid-reflux-heartburn

Coffee and tomato products are some of the worst foods for GERD. I love coffee so I switched to a low acid coffee made by Folgers know as "Simply Smooth (Gentle on your stomach)".

Raising the head of your bed by at least 15 degrees can also help. As well, avoid activities that require you to bend over a lot soon after eating.

It took me about a year to wean myself off of the proton pump inhibitor that I had been on for years. If you have been taking them for a long time you get a GERD rebound when withdrawing them so you must take it slow in that case.

Which vitamin or vitamins did the testing show you are deficient in? What vitamins and supplements are you taking to address these deficiencies. We commonly recommend a B-complex, D3, Magnesium and zinc. As much as is possible, focus on eating fresh meat, vegetables and fruit and keep the food simple and plain rather than eating processed stuff and things with a lot of ingredients. Make sure all your pills and supplements are gluten free as wheat starch can be used as a filler in these things. You may find that the GERD improves as you rebuild your body's nutrition status. 

Finally, I am attaching an article which is a primer for getting started on the gluten free journey and becoming aware of hidden sources of gluten: 

 

 

[cristiana]

Hi Carmen22

I'm so sorry you are still in so much pain.

Apart from the great advice above, I would recommend temporarily you look into diets to relieve reflux and gastritis.  I get both, normally after an episode of glutening but sometimes not.   

Generally speaking, such diets avoid spicy and fatty foodstuffs, citrus fruits, tomatoes, alcohol and caffeine. Drink plenty of water, and chamomile tea as alternatives.

A tip I learned from someone on this website some years ago (I wish I could remember who!) recommended slow cooked chicken, in stock or just plain water, in a crock pot, with carrots and potatoes, until the chicken and veg are really soft. It is a great meal which will be kind to your stomach.  You can puree up the ingredients to make a soup, too. 

Reflux and gastritis diets also often encourage eating smaller more frequent meals but also making sure your stomach and gut really rest at night.  -  so don't eat too late, perhaps avoiding food 2-3 hours before you go to bed.  Using a wedge shape pillow at night, or propping your bed at the top end with bricks, helps the acid not enter your throat.  My GI suggested Gaviscon (the Advanced one, which is strongest) before I go to bed at night and it really helps.

Do come back if you have any further questions.

Cristiana

Edited November 9, 2023 by cristiana

[Blue-Sky]

Melatonin and tryptophan control muscle spasms, and the relaxation of a muscle which allows for a small amounts of stomach contents to leave the stomach and enter the small intestine. Supplementing is better than foods containing tryptophan for example as it is already broken down and can be absorbed in the stomach quicker.

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-10-7A

Soluble fiber may also help, as it can absorb stomach acid and enzymes and make them less harsh.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6469450/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5989243/

https://www.webmd.com/vitamins/ai/ingredientmono-919/guar-gum

https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/s12986-016-0070-5

[Keith Polk]

I was diagnosed with celiac last December. I have been on gluten free diet as told but now the same symptoms as before are starting again.I have to take anti-diharea medicine every day just so I can work.I have also been dealing with all over body pains in all my joints for over two years .None of the doctors see anything in my bloodwork that suggests what the problem is.Please help.

[cristiana]

Hello Keith

I am so sorry you are still experiencing these issues.

The first port of call in situations like this is to be absolutely sure that no gluten is sneaking in.  I had a 'relapse' some months after my diagnosis and it took me very long time to work out I was buying an iron supplement that had gluten in it.  There is a gluten free iron and vitamin syrup in the UK called Floravital which is gentle on the stomach - except I was buying Floradix by mistake, also made by the same company, which does contain gluten.  The packaging is almost identical to the gluten free variety but Floradix was definitely not gentle on my stomach! 

Another thought - it could be that now you have come off gluten you are reacting much more strongly to even the smallest amount that might be sneaking into your diet.  A glutening a few months after my diagnosis caused hardly any symptoms at all, now I can be physically sick I take a major gluten hit. 

Yet another thought - are you eating out in restaurants that are serving what is meant to be gluten free food?  That can be a major source of cross-contamination, some very well-meaning caterers don't really understand what gluten free means and how stringent one has to be.  If you are eating out a lot, I'd recommend stopping that for a few weeks and see how things go.

It is also possible that you have developed a food intolerance to something other than gluten.  A food diary might be helpful in identifying what it could be.  Or it might be that you have developed another GI condition, for example IBS or microscopic colitis.  Have you had a sigmoidoscopy or colonoscopy since your diagnosis?  If not, I think it would be worth doing if the symptoms continue.  

Anyway, perhaps have a read of the following Beginners Guide and see if anything has changed in your circumstances which might be letting gluten through.

Cristiana

Edited November 11, 2023 by cristiana

[trents]

Cristiana's warning about eating out is to be heeded. Studies show that eating out is the #1 underminer of eating gluten free. You can order gluten free food at the restaurant but they will often cook it in the same pots and on the same grill that they use for wheat things or serve it with the same utensils.

I also want to draw your attention to the fact that food companies can and do change their formulations such that what was once gluten free ceases to be at some point in time. Don't take anything for granted in that sense and continue to read labels, even for those products that you have checked in the past that aren't specifically labeled as "gluten free".

[Raquel2021]

13 hours ago, Keith Polk said:

I was diagnosed with celiac last December. I have been on gluten free diet as told but now the same symptoms as before are starting again.I have to take anti-diharea medicine every day just so I can work.I have also been dealing with all over body pains in all my joints for over two years .None of the doctors see anything in my bloodwork that suggests what the problem is.Please help.

Hi Keith,

You really need to triple check your diet. Check your medications.  What about that anti diaharia medication your are taking. I was seeing a neurologist for some issues related to my celiac and she suggested I eliminated rice and it has made a difference.  You would also need a paleo style diet. Highly nutrition food every day. There is an article about how strict you have to be with your diet here on the forums that show you how to manage this diet. I also eliminated dairy which is really hard. And cut down gluten free junk. So basically lots of veggies, leafy greens . I do green smoothies.  A variety of fish/meats. And I sort of tolerate nuts. Again triple check everything and also take a look at possible cross contamination.  Like eating out can be an issue. I am super sensitive so I understand. 

[Wheatwacked]

 

All of the above posts have good information, and I'll give you some specific steps from my recovery, in addition, to maybe quicken your healing.  An appointment with a Nutritionist familiar with Celiac Disease would be helpful to you.

     You have malnutrition and that is why the doctors are baffled. 

On 11/8/2023 at 1:59 PM, Carmen22 said:

Does anyone have tips to at least reduce the acid reflux, pain and to heal my throat? 

On 11/8/2023 at 1:59 PM, Carmen22 said:

no diary, no nuts, no eggs

On 11/8/2023 at 1:59 PM, Carmen22 said:

belly bloating for a really long time before it got worse, like 5 year prior

 Take a thiamine supplement or benfothiame.  At 300 mg or more the effects are evident in days. Thiamin is essential for carbohydrate digestion.  "Thiamin deficiency usually presents with symptoms of peripheral neuritis, cardiac insufficiency and a tendency for oedemas and may be accompanied by extreme fatigue, irritability, forgetfulness, poor coordination, gastrointestinal disturbances, constipation, laboured breathing, loss of appetite and weight loss (WHO, 1999)."

Choline - Take a supplement that supplies 500 to 1000 mg of choline. The main food source is eggs, milk, meat.  It takes 10 cups of cooked brocolli to equal the choline you get from 3 eggs.  Choline is essential for digesting fats.

Quote

 

  Gastrointestinal Reflux Disease - A Naturopathic Approach

     Phosphatidylcholine - Choline is as essential nutrient for humans, and it is necessary for the structural integrity and signaling function of all cells. Choline is also used for neurotransmission, where choline combines with another compound called acetyl CoA, forming acetylcholine, a neurotransmitter of muscle activation.[11] Since phosphatidylcholine is a precursor to acetylcholine, it has been used for the purpose of strengthening and toning LES-muscle contraction.[5] Choline can be found in foods such as eggs and meats including poultry and fish. Higher doses of choline are needed for the treatment of GERD; therefore, supplementation with phosphatidylcholine is the best option in comparison to food sources.

     Most blood tests show the doctors that the blood levels needed to maintain organ functions are in range.  They don't test for cellular levels.  For example the blood test for potassium measures the amount in your blood, but the potassium inside your cells is 100 times higher.  That potential difference in electric charge is needed to help nutrients get into and waste to get out of the cell.  It takes magnesium to power the potassium pump and a excess of potassium above the normal readings for 24 hours to convince the body that there is enough to pump into the cells without affecting the blood level homeostasis.  If blood level is low the body sucks the potassium out of the cells and bones because heart trumps bone in tems of biologic priorities and the potassium sodium ratio is strongly associated with Blood pressure. Potassium is an important part of bone density so sucking the potassium from the bones to protect blood pressure will cause loss of bone density. It the ribs and ileac crest there is more potassium than calcium.

Quote

 The average potassium intake in the Netherlands lies just below the recommended daily intake. It is nearly impossible to get an overdose of potassium from natural food sources and the contribution on potassium intake from supplements is small. Almost the entire daily intake of potassium is excreted by the kidneys in healthy individuals.   Potassium intake and risk for hyperkalaemia reviewed

 

On 11/8/2023 at 1:59 PM, Carmen22 said:

My throat has still not healed

Iodine is an essential mineral for healing.  In the Netherlands, amoung healthy adults,  the prevalence of low iodine supply among adults is between 4 and 20% for women Adequacy of the iodine supply in The Netherlands.  It will be more prevalent in Celiac Disease because of malabsorption and food avoidance.

On 11/8/2023 at 1:59 PM, Carmen22 said:

I feel like I'll never be able to live again.

On 11/8/2023 at 1:59 PM, Carmen22 said:

I am just in so much pain that I rather not exist.

On 11/8/2023 at 1:59 PM, Carmen22 said:

I cannot take another 2 years, I would not last

When I was in so much pain I could not stand for more than 10 minutes Prednislone saved the day.  Once I started gluten free I was able to reduce the dosage from over 30 mg a day to zero for the pain.  Budesonide is a similar corticosteroid that is used to treat Crohn's Disease.  Less potent than predisolone but has the advantage of not causing Secondary Adrenal Insufficiency.  Talk to your doctor about trying it for a while until the pain subsides, which it will. Have faith.

As to your feelings of hopelessness, a large dosage of vitamin D will help. The 25-hydroxyvitaminD3 blood test is one of the few that accurately represents intake.  I've been taking 10,000 IU (250 mcg) of D3 since 2015.  It will also help with bone and immune system health,  Vitamin D and Depression: Where is all the Sunshine?, Daily oral dosing of vitamin D3 using 5000 TO 50,000 international units a day in long-term hospitalized patients: Insights from a seven year experience

 

[Keith Polk]

I feel the same.No hope

[Keith Polk]

I had covid in July of 22.I was prescribed plaxivad .Seems like afterward my problems began.That December I was diagnosed with celiac.Does anyone think as I do that plaxivad could have contributed to celiac?

[Wheatwacked]

No.  With low D you are open to all sorts of infections and autoimmune diseases.  Luck of the draw depending on other nutrition and environmental factors.

Quote

 

The study is based on data from Israel’s first two coronavirus waves before vaccines were widely available. It found that people with a vitamin D deficiency are more likely to develop a severe or critical case of COVID-19 compared to people who had sufficient levels of the vitamin in their blood.

Patients with a vitamin D deficiency were 14 times more likely to have a severe or critical case of COVID-19. Additionally, the mortality rate for those with insufficient vitamin D levels was 25.6%, compared with 2.3% among those with adequate levels.  What is the link between vitamin D levels and COVID-19?

 

 

[trents]

24 minutes ago, Keith Polk said:

I had covid in July of 22.I was prescribed plaxivad .Seems like afterward my problems began.That December I was diagnosed with celiac.Does anyone think as I do that plaxivad could have contributed to celiac?

I think you mean paxlovid. I would think that the COVID itself would more likely to be the gene trigger than the paxlovid antiviral.

[Keith Polk]

Very weird but I had been a very healthy person till I got covid.I was active in overnight backpacking, riding dirtbikes,exercise .Now I don't do any of that because I don't have the energy and stamina.Anyone relate?