Please could anyone give me advice was told I have celiac disease 8 weeks ago .. bad lower right pain

[Pink44]

hi, please could anyone give me some advice? I was told I have celiac disease about 2 months ago, I was constipated so much pain in my lower right, and aches in my body, I have been on a gluten free diet since I was told to eat gluten free . My aches stopped after 2 weeks but the constipation seems to be worse, doctors gave me sachets to drink everyday, they said it takes time for everything to settle down, but I’m so worried this pain is getting worse lower right I rang my doctor he said after you have had your appointment with the dietitian this is 10th Oct 2 weeks after that if I still have this pain they will examine me.. I feel tied again heels of my feet hurt muscles hurt when I first get out of bed.. I’m still on sachets and go every day now, stools are looser but that be the sachets helping. I have a bloated tummy all the time bad wind. I do eat out a lot 2 times a week I ask for the gluten free menu. Am I doing something wrong am I getting contaminated do you think? I stick with this diet all the time I drink lots of water I don’t have dairy as I’m lactose to. The doctor just said the pain will be constipation my body will take a while to heal.. I thought I should be feeling better not worse.. this lower right pain is causing

Me so much anxiety I can’t sleep .

Does anyone else have lower right pain ?

Muscle aches? Tiredness but can’t sleep

Please help?

Much appreciate any advice

Thank you

[nellie237]

Hi Pink,

Welcome to the forum, and I'm sorry that you are still feeling so ill.

I can't help with the constipation I'm afraid as I didn't experience that.

Has your GP checked your key nutrients? ie Iron, folate, B12 & Vit D as you are likely to be deficient in these, and they may be causing some of your symptoms.

Magnesium is also likely to be in short supply, but the blood test isn't very efficient. Magnesium can help with constipation, but there are quite a few different types of magnesium supplements and you need to research before deciding what may be beneficial to you.

Eating out..........I've seen many recommendations to speak to the kitchen staff before eating out. You need to ensure that it is understood that preparation surfaces etc are gluten free. Are you sure that the places that you are eating in aren't just using GF ingredients in a fully gluten zone?

Sorry, my reply is a bit brief, but it is late

[Pink44 in reply to nellie237]

Hi, I have had blood tests done, all negative

My iron is ok, not sure they tested me for

Vit d or the others, I have bought some magnesium but it’s just a cheap bottle for £3. I will look up to see what else is better.,

I already do have vit d.. I am going to start with vit c to.. not sure about b12 what’s that for?

I went again to the doctors 3 days ago they examined me they said it is only constipation everything should get better soon.. but they noticed I have a rapid heart beat now, so I have to go for a e c g

Probs my anxiety .. but they are checking it as I get out of breath easy to.. it’s not covid as ive had 2 tests in 2 weeks..

When I eat out I do talk to the waitress first to explain things to her. Then they go talk to the chef.. sometimes it’s harvester . But not going there again as the food seems to be not as nice..I always check they do gf before I go..

Many thanks for your advice

Much appreciated

[nellie237 in reply to Pink44]

Hi Pink,

I'm sorry you have to go for an ecg, and hope that goes well, and I'm glad you are negative for Covid.

I suggest that if you don't have access already, ask for online access for your blood results. This is usually a simple process involving filling in a simple form available at Surgery reception - they will want proof of ID, but then should only take a few days. If your GP Surgery are not yet set up for this, ask the receptionist for printed copies of all your blood results for the past couple of years. You are legally entitled to these without charge.

Dr's tend to tell patients that results are OK as long as they are 'in range', but you may be scraping the bottom of the range.

Vitamin B12 is involved in helping the body: make red blood cells and keeping the nervous system healthy.

As you have a coeliac diagnosis the British Society of Gastroenterologists recommend the following annual blood tests

"Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),146 147

liver disease (aspartate aminotransferase/alanine aminotransferase)40 and

dietary adherence (anti-TG2 or EMA/DGP

bsg.org.uk/clinical-resourc...

MAGNESIUM

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

I hope that you start to feel better soon.

[Pink44 in reply to nellie237]

Hi, thank you for getting back to me..Just seen all this..

I have had bloods done.. and a fit test.. all normal I’m wAiting for a gastro doctor now to ring me..

I will ask about all my blood tests.

You are right. They told me my iron was normal but still low..

I was taking normal magnesium

I think I might get the citrate one. As I think I need that .. plus I’m going through early menopause now..

but I don’t want hrt…

Whst other vitamins are best to have?

Oh I really can’t have dairy now to..

I had a uti and the antibiotics just bloated my tummy right up.. more then it is..

thanks for advice

Appreciate it

[Saba82]

Hi. I do have headaches and muscle pain,but I have iron deficiency anemia and it takes a while for ferritin level to increase. So I also think you should get checked for iron level and vitamins as well. I did eat yesterday out and I’m feeling not ok today. I asked them to make it gluten free but I was told that kitchen may have gluten and they are not promising that it’s gonna be 100% gluten free. Not gonna eat outside anymore,at least until I get healed intestine results.

[blowinginthewind]

I would suggest perhaps ask GP to do a stool sample, this will tell you whether you are producing all the necessary enzymes to properly digest the food you eat. And as other people have said, ask that they check your vitamin levels. If the pain doesn't go away and you have had colonoscopy, or are on a long wait for one, ask for a pelvic scan, in case one of your ovaries has a cyst. Good luck

Liz x

[HowNowWhatNow]

Keep a symptom diary. If you think it’s constipation then buy an over the counter product to help that.

And do ask doctors, if it continues, for an abdo ultrasound. The younger you are, the more seriously the NICE guidelines tells them to take such things.

[HowNowWhatNow in reply to HowNowWhatNow]

I see you are already taking sachets. If you are in real trouble on that count I think suppositories work faster.

[Hidden]

First thought - what's in the sachets the doctor gave you? GPs are poor at spotting gluten ingredients and ingredients that may come from gluten source. Check the ingredients.

Secondly - sounds like gluten might still be getting in to your diet somewhere. It takes time to get on top on gluten free so check your kitchen arrangement, any gluten free foods your eating, all processed foods you are eating, and be aware of hidden sources of gluten. Also be aware that even GF oats are an issue for many coeliacs.

Thirdly - coeliac causes bacterial issues, including SIBO. Might be worth looking at that (although that tends to cause the opposite of your current situation). Also ask for a H-pylori bacteria test (causes gut ulcers and digestive issues).

Fourthly (if there is such a word) - coeliac and dairy intolerance go hand in hand. Maybe trial dairy free for a few days and see how that goes.

Fifthly (I'm stretching it, I know) - all grains, even the GF ones may be an issue. Also compounds called lectins in a lot of foods (gluten is a lectin) which may mimic your coeliac symptoms and cause gut irritation. Histamine intolerance also gets a lot of mention on here of late - worth having a look.

In meantime, back to your GP, and ask for referral back to Gastro for further investigation.

Good luck.

[Pink44 in reply to Hidden]

My sachets are gluten free..I try not to eat processed foods.. I do buy odd food from the gluten free section.,

I only eat chicken and fish.. and cook from scratch, sometimes I wonder if I have been contaminated.. as my partner and daughter eat gluten.

But when I cook a meal we all have gluten free even Yorkshire pubs with our dinner..

I don’t eat oats..

I also don’t have dairy products as I’m lactose intolerant.. I found that out when I had normal milk in my tea. I only drink soyA

Almond and coconut milk now.. the doctor said it takes about 6 months then I can start having dairy again.. I’m not really bothered about it. I’ve not even had lactose cheese

Or anything I’ve been having vegan .. that’s only sometimes..

What is s I b o? And histamine?

Thanks for advice

Much appreciated

[Hidden in reply to Pink44]

Sounds like you are streets ahead, so apologies for repeating the ground you've already covered. It's amazing how many on here are just living such stringent diets and not just avoid bloomin gluten. SIBO is Small Intestinal Bacterial Overgrowth - the wrong bacteria cultivates in the wrong bit of the GI tract and causes merry havoc in terms of digestion and symptoms. It's tested for with a breath test, and treated with antibiotics. Histamine is a compound found in certain foods and can provoke a range of symptoms, and they can be different from person to person. Digestive symptoms can be one, various inflammations, etc. common. Good info here: healthline.com/health/hista...

[Meldrewmoanef]

Hi, like you if I say anything with gluten, it does not give me stomach ache or make me sick, but what does happen is the next day when I said I have tremendous back ache and lower stomach pain, which does disappear during the day. Some times when this happens it is difficult not to get out of bed, I guess we need to be more careful what we eat. For your other bowel problem try peppermint oil capsules, I find these really do help with the constipation also a couple of sugar free sweets, sounds daft but it works. Hope you find this useful.

[Maddy33]

Hi Pink. I am new to the forum too. Just seen your post in particular about constipation. I have suffered with this for over 30 years. I’ve only recently been diagnosed as celiac. Takes two of these tablets with water a day. They will completely sort constipation. I promise. I will attach screenshot. Good luck xxx

[Meldrewmoanef]

I had the same problem with bad wind, and was prescribed peppermint oil capsules they are easy to take and cured the problem, they will also help the constipation problem. Try them.