ellajones

Hi guys, I have made some other posts on here but just thought id make a post now as my exams are almost done and I am having an endoscopy in just over a month. I will start eating gluten on Saturday and safe to say im scared both about the endoscopy and the 4 weeks of gluten before it!

I was just wondering if anything has anyone advice on how to deal with eating gluten after not having it for so long. My main issues are insane bloating and extreme abdominal pain which has continued during my gluten free diet (hence the endoscopy) so my issue may not even be with gluten so it might be not as bad as im thinking. I am about to turn 18 and have my last a level on Friday and therefore have a few things planned to celebrate, so im really hoping im not going to be too bad.

also if anyone has had an endoscopy done and could say anything about it that would be great, I am quite scared of hospitals and needles!

any help would be great

16 hours ago, knitty kitty said:

@ellajones,

Have you tried taking Thiamine Vitamin B1?

Studies show thiamine can help with menstrual cramps.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825494/

Thiamine and getting your Vitamin D level up will help.  Also take a B Complex and magnesium. 

I had very bad cramps and prolonged periods. I developed a fondness for my hot water bottle.  The warmth and weight of it is relaxing. 

Lay on your back, hot water bottle on where it hurts and wiggle your toes.  Concentrate on moving each toe individually.  The nerves from the toes enter the spinal cord near the same location abdominal nerves do.  Conscious muscle movement will take precedence over other input and the cramps should take a back seat.   

Yes, cut out all dairy and processed foods.  Yes, consider eating meat again.  Meat and liver are great sources of B Complex vitamins and minerals like iron.  

I followed the Autoimmune Paleo diet.  Just meat and veggies.  No nightshades (potatoes, tomatoes, eggplant, and peppers). No grains, no alternative grains.  No oats. No nuts.  No dairy.  

Keep a food/mood/poo'd journal.  It helps pinpoint problematic foods that might trigger additional symptoms.  

And get your B12 level and iron checked.  Veggie-terians are notorious for anemia and low B 12.  Check thyroid function, too.  Have you notified your doctor that you're in great pain?  A check for endometriosis might be warranted.  Endometriosis is linked to thiamine deficiency.  

Keep us posted on your progress.  

 

Thank you so much for the reply. I completely agree about the hot water bottle, I make one every night and its the highlight of my day!

I am currently taking a D3 +K2 tablet as well as an advanced multi which contains vitamin B1 but only 3mg per tablet so im assuming thats not enough? I recently had another blood test done and expected to be deficient in at least iron because im so drained all the time but all my mineral levels are apparently normal. Regardless I think it is time to start eating meat again but im now scared that it will worsen my bloating and pain after not having it for years, I know in the long term this is benefit but im currently doing my A level exams and am in enough pain as it is!

I am cutting out all processed foods but at the moment am finding it difficult to cut out diary completely like cheese etc. I also have muesli every morning with coconut milk, Is this bad as you have mentioned about oats (they are gluten free oats).

I have told my doctor about my pain and they have taken a blood test, effectively found nothing unusual and are booking an ultrasound. I have debated about having endometriosis however I really hope I don't.

again thank you for the advice, I tried the toe wriggling last night and it was great!

Hi, I have already made a previous thread on here about my bloating but since writing that my pain has got 10x worse. I was diagnosed with celiac from a blood test last July and since have been gluten-free (I know you need an endoscopy to be 100% confirmed but I am having this after my a levels). It seemed as if my bloating was finally dying down/manageable until about 2 weeks ago. I don't know whether it is due to going back to school and wearing clothes again (been learning at home for 3 months with no trousers on etc because of pain) or whether its been due to my periods, I have been having 4 week periods at the moment of utter hell even though I am on the pill. The pain I am feeling at the moment isn't my normal bloating pain, its more like someone has twisted my insides and It feels like scrunched paper, all I want to do is curl into ball when im awake. I used to be able to roll down my trousers or skirt or whatever to hip level and be okay but now this is unbearable and I think actually hurts worse so then I unroll but after a while my stomach starts hurting as its pressing on it. I have had to leave school almost every other day these past couple weeks because of the pain of just wearing clothes/sitting down for 50 minute lesson. I am really not sure what to be eating/doing at the moment to improve this pain. Should I cut out sugar? or reduce amount of lactose? Should I start eating meat (ive been veggie for 4 years) I have no clue. Another factor could be stress I am in year 13 and safe to say this has probably been my worst school year yet!

I hope this makes sense, sorry for the rambling!

On 2/28/2021 at 11:54 PM, Grizzly said:

Look up “Anthony William the medical medium” You can heal, I was diagnosed awhile back and I took out gluten, I till got worse and felt I was actually losing my life, things got so bad for me... it’s not the body attacking itself, it’s virus and toxins in our environment that make us sick over time if we don’t learn to cleanse our bodies out throughout life. When you eat gluten, dairy, eggs, you feed viruses in the Body. We all have them some more the others that’s why some people get sick and others don’t yet, but over times eventually we all do. You can heal from this. You just have to kill the bugs until symptoms go away. When I found “medical medium” which is free btw. The info told me the truth of what was really going on in my body.  I thought it was crazy that out of no where I was sick from so many things all at once it just didn’t make sense to me.  When I found medical medium I learned so much and Started using the info he gives into my life,  I started healing not only celiac disease but other issues I was having with my health. Your body will always heal. You get a cut, your body heals. It will never turn against you. You just need to learn The truth and what to do So you can start to heal... there are a lot of doctors that don’t know the truth because they are taught in school by the books  that the body attacks itself if you have celiac‘s disease because the truth is no one knew what the cause of it and so the medial world just blamed it on the body attacking itself. There are many doctors know that are learning this info and helping many heal Now, it’s just not everywhere yet. Again if your open to it look up Anthony Williams medical medium he has all social networks you can look him up on, it’s free and it’s life changing you don’t have to live with this crap anymore. Good luck 👍🏼 

On 3/2/2021 at 6:08 AM, Grizzly said:

I understand, I was not sure at first either but I became really sick from many different illnesses on top of having celiac, and when my doctors no longer were able to help me, it was my last hope. It’s been healing me and it’s a safe way to cleanse, it just involves bring in healthy foods nothing crazy and using celery juice as a tool to help heal many of the issues going on in the body... I totally get how it may sound but all I can say is to be open to trying it before knocking it out completely if you find yourself down the road still struggling. the info is always here for you. And sorry for posting a repeat, I just wanted to help as many people as I can and I was giving the same info so it was easier to copy and paste, that Didn’t mean to come off “trolling” Or whatever I just wanted to help out people that are going through the same thing I went through and because I actually saw how it’s healing me from being pretty much being bed bound and almost losing my life, to me being back on my feet and getting better everyday you can’t help but want to share the info with others. It’s not just me it’s many others people who were at their braking point, I guess you gotta get there in order to reach out and try it.  What people chose to do is up to them. 
 Wish the best for everyone on here suffering. 

Hi, this is something I will defineilty look into! I am glad that it has worked for you and that you can have a somewhat normal lifestyle! I am not sure I will try anything too drastic as it is still relatively early on for me and I don't want to upset/change my diet too suddenly but it is definitely something I would try if my problems continue. Thank you for your help

On 2/28/2021 at 10:54 PM, AlwaysLearning said:

I agree that vitamin deficiencies are definitely something to check for. The way gluten can mess up digestion can mean that you are suffering from malnourishment even if you are eating well-balanced meals, causing deficiencies. But being vegetarian also means that you are automatically at risk for deficiencies and should be asking for your levels to be checked regularly, such as at your yearly checkups. Some deficiencies could ease up once your gut heals, while others can be ongoing due to diet choices. On the alternate side of the same coin, some supplements come with side effects and can cause abdominal pain. I would not supplement anything unless you test as being deficient in it. And before taking any supplements, I would research extensively the side effects and proper dosages.

Don't forget to consider more mundane reasons why you might have abdominal pain or bloating, such as gas. Gas can be incredibly painful, especially if your digestive system is already on edge from gluten. Being stuck at home, not moving around as much, wouldn't help. I would start to include some short walks into your daily routine, which is an excellent way to keep things moving properly in your digestive system. Making sure you are drinking enough water is also smart (and not drinking acidic or carbonated beverages).

But if you've only been gluten free for 8 months, you can expect to still be making some mistakes and accidentally glutening yourself. In addition to considering all foods suspect, learn more about hidden sources of gluten, such as makeup, dental appliances, soaps, shampoos, etc. Until you can move into your own place and set up a completely gluten free kitchen, you can presume that cross contamination will be an ongoing problem. 

Best of luck to you, and don't give up hope. It will get better. Keep researching. Keep asking others for help. You'll get really good at this before you know it.

 

Hi, thank you for your help, Its so nice and interesting to read peoples replies that are/have been in a similar situation and know what they're on about! When you say about testing as being deficient in vitamins, would that be through my doctor/do I ask for the test?

To answer the second part of your reply, I do try to do some form of exercise a day -either walking or a workout. More recently I have been having a sharp pain near my right hip which I'm unsure whether it is my hip flexor or to do with my bloating. Therefore this combined with pains from my periods has made walking/running unbearable sometimes. I also do like to keep hydrated -I would say I'm drinking the most water then I have ever in the past!

It is interesting how people have mentioned about becoming glutened through shampoo and makeup etc as I never even knew this was possible! is this because bits could enter your mouth accidentally? I would say my main problem would be cross-contamination in my kitchen as I live with two people that eat (and love) gluten.

My main aim is just to be confident with my body and be able to wear normal clothes with summer approaching and holidays etc.

On 2/27/2021 at 3:21 PM, Posterboy said:

EllaJones,

I wrote a Posterboy blog post that might help you.

All that studying.....can deplete our B-Vitamins.....Stress of any kind burns energy...

And we can't make energy without our B-Vitamins  and Magnesium...

Prousky years ago did a nice study of how he reversed heartburn, bloating etc....

By given student(s) Niacin which being low in (causes/triggers low stomach acid)....but you will want to try the NIACINAMIDE form because it is the non-flushing form of Niacin...

Here is his research.....

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

This Posterboy blog post of why you would want to take a B-Vitamin and Niacinamide specifically for Heartburn and bloating explain it well...

B-Vitamins are best taken as Complex....because they work together synergistically...luckily higher doses of Niacin in B-complex's use Niacinamide because it is the non-flushing form of the Vitamin aka Vitamin B3.

Being Low in ONE will trigger you to be low in others...

So taking a B-complex frequently IE with meals or 2x a day .....will probably help your bloating in about 3 months if you can believe the Prousky research...when you begin BURPING ALL the time....your Bloating will improve!

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

Posterboy,

Hi, thank you for responding and sorry this is such a later reply I have been caught up with school. I have not really heard much about vitamin B being associated with celiac disease so that's really interesting. When you say its best taken as a complex do you mean with other vitamins? Im currently taking an advanced multi vitamin and an advanced D3+K2 vitamins (for my immune system) once a day. I know someone else said on here that vitamins can actually make you bloat more?

7 hours ago, trents said:

I certainly would ask him to do that specific test as he or she may not be well-versed on gluten/celiac disease issues. Most docs aren't. Think up a tactful way of suggesting this test be done. You don't want to come across as insulting the doctor's intelligence. Print something out to have on hand to give the doc.

okay great, thank you for your help

19 minutes ago, trents said:

You are welcome!

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

The TTG-IGA is the most important one.

Also, you should check out this thread started by another 17 year old "uni" student struggling with celiac disease. Lots of overlap with you in her story and we would give you much the same advice when it comes to taking control of the situation.

 

okay great, thank you. I have looked at that thread and it does seem really helpful! I am guessing then that I have to ask my doctor to specifically carry out the TTG-IGA test?

2 minutes ago, trents said:

ellajones, welcome to the forum!

I noticed you said you have "tried to be completely gluten free." Several recent studies have shown that most people who claim to be eating gluten free are actually practicing lower gluten eating, avoiding the main sources of gluten such as bread and pasta but still getting regularly "glutened" due to ignorance or inattention to how gluten is hidden by terminology in processed foods, medications and supplements and how it enters the otherwise gluten free food we eat through cross-contamination during growing, transport, storage, processing and preparation in homes and eateries. The studies show that this is particularly true of those who still dine out. Even small amounts of gluten can prevent healing of the gut. Truly eating gluten free requires significant education and diligence.

It would be a good idea to get follow-up blood antibody tests done to see if you are still inadvertently consuming gluten regularly. If that is the case, you could expect the numbers to be better but still indicate damage being done to the lining of the small bowel since diagnosis and your effort to eat gluten free.

That said, the other possibility is something you mention and that you have developed allergies/intolerances to some non-gluten foods. This is extremely common in the celiac population as "leaky gut" caused by the disease results in a dysfunctional, hyper vigilant immune system.

Thank you for the reply! I am currently waiting to have some blood tests done for a further check up by my doctor but they haven't sent out the details/ date of this yet (im sure this is due to covid and the fact they are extremely busy). Is there a specific type of blood test that you have to ask for to check if i'm still consuming gluten or will they do this anyway for the ones that have been arranged do you think? thank you again for your help

Hi, I was diagnosed as celiac almost 8 months ago now and have since tried to be completely gluten free. I thought by now that my symptoms would have calmed down but instead they have kind of stayed the same? (some days are horrible but others are okay). I am 17 and currently doing online learning, which on bad days I have to do lying down because I have bad abdominal pain. I feel bloated pretty much everyday and have struggled to wear clothing that comes up past my hips since I was diagnosed, I cant wear jeans or anything high waisted for longer than an hour. I am quite stressed with a levels and uni application so obviously this could be a factor but I didn't have this stress over summer and the symptoms were the same. I have read quite a bit on here about possible having other intolerances to diary or trying to cut out sugar? I am also a veggie so i'm not sure if that has anything to do with it. I just would like to not feel pregnant most days and wear normal clothes. Sorry for just kind of blurting everything out on here but any advice/suggestions would be great!