Having hard time with family members…

[Saba82]

Hi. I’ve been diagnosed with celiac disease 3 months ago and since then anxious all the time. I do feel a little bit improvement but I constantly think what if it’s not healing. I still don’t feel like old me. Biopsy result was Marsh 3a score. Although my doctor said it’s mild I don’t think that would be mild. It’s actual damage and it caused villi atrophy,partial,but still. It caused iron deficiency in me,hand tingling l,headaches and dispepsia. I was in London for the past 3 months and just came back to US,like 10 days ago. My bowel movement now is more frequent, my hand tingling and headache got better while I was there my energy level got better as well. But since we came back I feel like there is something wrong. I do have doc appointment on Tuesday for blood work and so scared that there will be no improvement. On top of all I do have big problems with my mom and husband, Im really tired of explaining of cross contamination. They think that I’m super picky and I do cause tension all the time. I asked them 100 times put everything in dishwasher but they still wash some of the stuff with sponge and put it back to drawer, I do ask them please don’t put gluten stuff by my Gf staff and every time it ends up by arguments and them explaining me that I’m the only person that react that way to my disease. I’m really tired,like I don’t have energy to explain them all over again and again. It makes me more sad and nervous

Sorry for so much negativity again:((. Do you think that 3 months is short time for recovery? Did any of you with Marsh 3a score got healed in short period of time?

Thank you

[Cooper27]

I'd provide them with official information from coeliac charities, explaining the issues with cross-contamination - they can't argue with it if it's an official source.

I'd also try to find any coeliac groups around you, and ask your family to come along with you, so they can hear it from other coeliacs.

Your gut is unlikely to have healed in 3 months. Your antibody levels fall quite gradually, so depending how high they were when you were first tested, you might actually still test positive for coeliac disease on a blood test. You just need to give your body space and it'll heal with time.

[Saba82 in reply to Cooper27]

My antibodies were in normal range 3 months ago. I’ve had endoscopy and colonoscopy because of anemia. Will have check up forBlood work. Have you had iron and vitamin deficiency and how long did it take for you to get back to normal levels?

[Bazmack48]

Hubby was diagnosed three years ago, it took a few months for him to start feeling better. We find family still think we are being fussy about cross contamination, outcome we don’t go for meals anymore. Hubby spent three weeks in isolation because of his stomach problems before being told he had CD so no way does he want to repeat that.

[toadstools]

Hi, it can take a year to start getting better, just stick to it, you may be anaemic aswell, see what your bloods say xx

[Saba82 in reply to toadstools]

My blood work actually improved. My anemia got better. But I don’t know it’s been a month since I’ve had a feeling of not emptying the bowel. Before GF diet I had bowel movements once a day,now it’s been 2-3 times a day and for the rest of the day I feel like it’s still not empty. Did you have such thing?

[Hidden]

Relatable, and not acceptable on the family front. It simply becomes a form of gaslighting and abuse for those who are coeliac and are constantly made to feel like they are a problem and a burden. No answers for you when they are all in the same house. It's like family insisting in smoking in same room as you knowing you have lung disease. They are simply going to have to get onboard and you are going to have to find someway of ring-fencing plates/cutlery for yourself. It is tiring, and makes me angry that the diagnosis is in many ways the beginning of the challenge, not the solution.

[toadstools]

Hi I am a coliac, keep up a strick routine with cross contamination, it can take a year to settle your stomach, keep to gf foods only, as you can damage your stomach, and the result could stop your stomach from taking vitamins in, I have a b12 needle every 3 months aswell as I am anaemic, try to cook your own foods lots of veg and fruit, hope you sort yourself out.

[Saba82 in reply to toadstools]

Hi. I had blood work recently which was 4 months after diagnoses and my anemia panel got improved. All my levels are normal,just in low levels of normal. My vitaminD is finally normal which I’ve never had before. No inflammation. Just my bowel movement changed after 3 months on GF diet. Before I had 1 BM during a day and it was normal. Now I have 2-3 times per day either solid or loose,depends on what I eat and feeling of not emptying my bowel completely,like something stuck there. Doctor said it probably related to diet change. All of the gf breads has 100 different flour and starches in it,all my vitamins are GF and they are the same,contain so many different starches and veggies oil. When I google about starches it says that it might cause laxative condition. So basically I’m consuming starches and different types of flours and different type of veggie substitutes in my diet which cause my intestine to work nonstop,which is not healthy at all. Will try to cut the bread and vitamins for some time and see the difference. Before I used to eat whole wheat which contained wheat flour yeast salt and sugar. Now in one slice of GF bread it’s corn flour,almond flour,garbanzo flour rice flour cornstarch potato starch surghum starch like endless list,why would they add so many ingredients?!?

[Penel in reply to Saba82]

Glad to hear that you have had some improvement. It’s a really good idea to avoid ready made gluten free bread! The additives like cellulose, emulsifiers and gum can cause problems.

I often make myself pancakes using just one or two gf flours, like rice or buckwheat. Some people make their own bread, but it can be difficult to get right.

[Saba82]

Hi. I talked to my doctor today regarding my BM changes and he said it looks like IBS stress related. The amount of stress and anxiety I’ve been having for the past 4 months probably caused IBS. He said blood work looks good and it’s shows that I’m responding to diet. And he also mentioned that I need to start antidepressants

[Tabbyme]

They are so selfish!!!! You need to find someone who will explain it to them!!!! My heart goes out to you. Get a lock and put it on your cupboard!!!!!

[Saba82 in reply to Tabbyme]

Now they are trying,but it’s really hard because they want to eat gluten and I can’t just telling them nonstop please wash your hands when you touch refrigerator,stove,plates. It hard for them to change their habits and for me washing out everything nonstop

[Tabbyme in reply to Saba82]

Hi Saba82, The best way is for you to have your own area in the kitchen and a couple of cupboards that are your gluten free areas. You need your own toaster. As long as dishes have been washed they should be fine. We don't keep our dishes in separate cupboards or pans. It is just a case of them being a little more thoughtful, but it would be a lot easier if you have your own area. There are many meals you can make that are gluten free that they won't even notice the difference. It is harder at first but honestly it does get easier as time goes on. Take care and good luck.

[Saba82 in reply to Tabbyme]

Hi I wash everything in dishwasher and every night I m washing all kitchen basically. My mom is the hardest person. She says your doctor said you good,you have mild one. Anyways, I hope it will get better. I do understand that it’s hard for them as well. Eating gluten all their life now you have to change it because your daughter is celiac I’m Persian and we don’t eat gluten a lot. Only bread. Persian kitchen is almost gluten free. Maybe that’s why my celiac wasn’t that bad

[Tabbyme in reply to Saba82]

It doesn't matter how bad it seemed!! The fact you had damage is enough. If they just wash their hands after preparing their stuff with gluten and do it on an area you don't use!! Our kitchen isn't massive but I prepare anything I am eating or we both are eating on one area, he does his bits in another (there is no way he'll eat gf bread 😂😂). He hoovers his crumbs up with a little shark hand vac and wipes down. Job done!! Honestly it will get easier but if your Mum doesn't get on board and support you she will poison you and you will end up ill!!! I'm pretty sure she wouldn't want that. Coeliac disease isn't just mild. It's just a disease and once you have it you have it. I do wish your Mum would understand. I really do wish you the very best, but remember, it isn't your fault you have Coeliac Disease!! Take care

[Saba82 in reply to Tabbyme]

Thank you

[Saba82 in reply to Tabbyme]

Do you know what was your Marsh score? Mine is Marsh 3a. It started last year. All of the sudden I got anemia and was having headache,hand tingling,pressure in my ears and very tired. Didn’t have that much digestive issues or had but related that to gastrities. I was diagnosed 4 months ago. Hand tingling,headaches,fatigue ear pressure,gas bloating improved a lot. But after being on gf diet after 2 months I got frequent bowel movements. My blood work has improved as well. My doctor said that frequent BM causes by stress related IBS and also diet change. Trying low fodmap diet. I’m hyper anxious person,having panic attacks and depression after diagnose and my doctor wants me to start antidepressants cause all of this cause more damage to my gut. Anyways,hope I will get over my anxiety and feel better soon

[Tabbyme]

Sorry. I don't even know what that is. I was told on the day I had the camera down my throat that I definitely had Coeliac Disease and then had it confirmed by letter a couple of weeks later after the samples were done. I had everything from early menopause, headaches, gastric problems that ruined my singing voice due to the acid reflux, anxiety, unable to concentrate properly, tiredness, I would suddenly nod off often at work, bloating, tingling, the list is endless and I was told over the years different reasons for all this and given all sorts of tablets, the worst being tramadol (don't ever take that!!!), This went on for years. Give yourself time. I'm a little unlucky that my recovery is taking longer but most people will feel the benefits of a GF diet after about 6 months and then other things will improve as time goes on. It was nearly 2 years before I could tolerate Gf lager!! 😊 Some things take longer than others. You may find taking some supplement vitamins helpful too at first while your body heals fully. Hopefully your anxiety will improve too!! It should, mine has!! I don't know what BM is but at first you may be sensitive to some foods but as long as you don't eat gluten ever and GF oats for the first 6 months (then try and see if okay) you should be okay. Breathing techniques can help with anxiety. I've had that forever 😯😳 and panic attacks are awful but I've learnt that holding your breath of breathing into a paper bag really helps as it cuts the oxygen level so calming the adrenalin. Little steps one at a time and you will get there!! 😊 take good care of yourself

[Saba82 in reply to Tabbyme]

Thank you,you too