Hi, my name is Saba, I’m 39 and have been diagnosed with celiac disease just a week ago. I’m very hypochondriac person and get my check ups every 6 months. In February I’ve noticed that my ferritin level dropped a lot, I thought maybe it was cause by diet I was on to lose weight. Then in my July’s check up it was the same plus my hemoglobin dropped a little bit and I was having tingling in my right hand.So I became very concerned and insisted on having stool test for occult blood. It came back positive and I was having the worst panic attacks,because there was possibility of colon cancer. Had endoscopy and colonoscopy last week and doctor said your colon is clear you have gastrities and there is redness in your small intestines from which he took samples for biopsy. And after 4 days he emailed me that results are back and there is nothing to worry and he just need to follow up with me before I leave to London for family visit. Oh my follow up he told me that I have celiac disease and I have to be on gluten free diet all my life. He said mine is so mild and it turned out to be stage 3a which is partial villi atrophy. He said relax,follow GF diet and enjoy your time with your family. I also had blood test for celiac panel which Is not ready yet. I’ve been anxious and hypochondriac all my life and now again I can’t enjoy anything. My brain doesn’t let me to relax. I think what if my genetic test comes back positive,does it mean that my 3 year old son has it too. What if he has it now? What if I became disable. I really don’t know what to do. My family is tired of my fears all the time. Does anyone else experiencing this? Or does anyone have celiac disease and doing fine now?
Sorry for so much negativity
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Saba82
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It sounds like they caught your celiac disease really early, which is great. Most people go undiagnosed for upwards of a decade.
I honestly would say that the genetic test for celiac disease is a waste of money. There's only one documented case of someone being diagnosed, who tested negative for the gene.
It might help to know that 39% of the population has the celiac gene (nearly every other person you pass on the street), but still only 1% actually go on to develop CD.
I think it's a pretty high chance your son has the celiac gene, but he still only has a 10% chance of developing celiac disease in his lifetime. The positive thing is that you know to look out for it, so hopefully you'd catch it early in him too if he does trigger his gene.
I hope he never gets it. He is 3. They caught early because since I remember myself I’ve been checking up every single part of my body. That’s crazy. As my sister said you always was looking for something and now you found it. Can I ask how old are you? Do you think they caught mine early? Can I ask about your diet?
It sounds like they caught it early, just based on how mild the damage to your intestines was described
Celiac can start at any age - apparently the youngest person diagnosed, was diagnosed at 16weeks old! But we have a local coeliac group where I live, and I've met people there diagnosed in their 80s.
My partner is the coeliac in our household, but I'm gluten intolerant so we both eat a GF diet. Mostly focus on naturally GF things, like rice, veg, meat, lentils. You do need to be careful not to eat foods with a "may contain gluten" warning and you'll need separate food prep spaces and cooking utensils from your family now, to avoid cross contamination risk.
Welcome here. Now you have diagnosed with coeliac disease which is an autoimmune disease with 100 symptoms. That’s not hypochondria, coeliac disease can also be linked to anxiety and depression. (Because of the Gut Brain Axis). It is natural to have lots of questions and sorry to hear you have poor family support. I hope you have other support for your anxiety and good management.
I am assuming that you are in the UK as you mention London. So, avoiding gluten, wheat, barley, OATS (which someone may or may not tell you) can be quite easily done. Changing kitchen equipment, toaster, chopping board etc. Personally, I don’t eat food labelled gluten-free. I dislike pasta, noodles etc.
You are asked
What if I became disable ? I wasn’t diagnosed for 27 years and there are others who took longer.
Now with regards to your son. Cooper answered about genetic test. I don’t know your set up at home. (Partner, with parents etc). But vegetarian parents generally raise their children as vegetarians. However, you may or may not consider a gluten free diet for him at home. This is for convenience and protecting your health.
For example, When a little one doesn’t want the rest of their crisps - we tend to finish food off without thinking. Cleaning their mucky hands or faces after they have eaten may accidentally expose us to gluten. It’s a suggestion. Others may have different opinions but at the end of the day, it’s your choice and decision.
Thank you for your respond :)Since I remember myself I always was hypochondriac so I might have celiac since childhood, I don’t know. I also have stomach problems,gastrities. Everyone in our family has. I’m not blaming my family. It’s been 20 years since I started to go to doctors every other day. My biggest fear is always cancer,I’m always looking for something in myself. So imagine you have a kid that cries everyday that I have cancer,goes to different doctors and everything turnes out ok after every visit. My mom has been diagnosed with stage 4 cancer recently and I’ve never seen her cry even 1 more time. My sister says please stop ruin your life. You are not living . Every other day you worry about new disease. She says it makes all of us anxious. She says you don’t event think how it might impact your son ‘s life. We decided to have family reunion after such a stressful year because of mom diagnose and now we all are here and I’m anxious and not happy at all and make them unhappy((. Do you live in London?
Hi Saba82, There’s a lot of grey areas in medicine. You may or may not have had coeliac from childhood. I have no idea but you have a diagnosis now. I may also have had coeliac disease as a child, family used to call me Hollow Legs - I’d eat and eat but be stick thin with a pot belly. But I’d rather spend my brain energy studying.
I hope the doctors are treating you for your gastritis and anxiety. Anxiety can be caused by upbringing, illness or a combination of both. The best thing is managing any chronic illness. Seeing therapists, having a calm, loving environment (your home), good friends, taking medication, breathing techniques.
The mind is like an untrained horse - it bolts in different directions. I am sorry that your biggest fear is cancer and you have a compulsion to search for illnesses. That must be very difficult for you 😞, mentally and physically exhausting, time consuming and dare I say, distressing. I know you cannot help it and it’s not your fault. I hope you are reassured when the doctors say you are ok.
It must be hard to hear what your family members say.
I’m dreadfully sorry to hear about your Mom. Please try not to compare (difficult I know) yourself with your Mom, just because she doesn’t cry doesn’t mean you can’t.
Hi Saba,I too thought I had bowel cancer but found it was coeliac disease. Please be reassured - it may not feel like it at the moment, but this is actually good news! Coeliac disease causes many different symptoms in different people, but always including the damage to the villi, and very commonly including various deficiencies including the problems with ferritin and Hb that you mention.
The reason this is good news is that provided you follow the diet, no further treatment is needed, and the symptoms will get better, and your long term health will be as good as if you didn't have it. In my case, I started to feel much better within a couple of weeks of going gluten free. Now, 2 and a half years later, I feel better than I have for years.
Don't worry about the genetic test - as Cooper27 says, there is really no point in doing it - you have the disease, therefore you have the gene. If your son starts to have problems, get him an antibody test and if it is positive, get him onto the gluten free diet and he will be fine. You might find your GP is happy to do the antibody test for him even without any symptoms.
Your diagnosis of "partial" villi atrophy means you have caught it early, and this is very good news, as when people have it for some years before diagnosis they suffer much more severe damage and more severe deficiencies because they get worse and worse at absorbing nutrients from food.
You say your sister pointed out that you were looking for your problem and now you have found it - I think she has a point - try to relax now and see this as being much better than the cancer you thought it was. It is something you can treat yourself with diet.
I think you will find that all of us here who have coeliac disease are doing fine provided we stick to eating no gluten at all. We have not become disabled as a result of it, and neither will you - it doesn't do that to us.
Start by not eating ordinary bread, cakes, pizza, or anything else with wheat flour in it (or anything with wheat, barley, rye or oats in the ingredients list). Enjoy your time in London, and then come back here and ask any more questions you have. Everybody here is helpful!
Thank you. But the problem is that more I google more I get scared. Now I’ve find out that celiac put you in high risk of getting rare type of lymphoma,thyroid cancer. I’ve been having cystic nodules in my thyroid that have been monitored for 10 years now. It’s been a week that I feel light pain on the right side of my neck lymph nodes area,the lymph nodes not enlarged. I’m scared so much. Just came back from London and didn’t enjoy a single minute of my trip. All 3 months was thinking and googling about celiac disease. My hand tingling and migraines got better,muscle pain got better. I do have appointment with my primary doctor on the 7th of December. My gastro doctor says that my celiac is mild but it’s marsh 3a . I’m not a doctor but I don’t think that 3 is mild,it’s not 1 or 2. It’s actual damage to my villi. How long have you been having celiac disease and did it cause more health problems for you?
I really do understand the worries, as yes, there are problems that can arise with long term coeliac disease. But, as I said before - you have caught yours early, so provided you stick carefully to the diet, you will not have those problems. When people try to tell me that it won't hurt me to take a risk on cross-contamination now and again, it is the rare cancer risk that I tell them about - if I don't ever risk what I eat, I won't have the risk of the cancer.I am pleased to hear that your hand, muscle and migraine symptoms are improving - that is what I would expect, and good news.
Yes - you have had actual damage to your villi - that is how coeliac disease is diagnosed. But at 3, it is much milder than many people have when first diagnosed. The body is capable of healing itself - it takes time, but stay on the diet and your villi will return to normal.
If your thyroid problem is related to coeliac, it will improve. If it stays the same, it is probably a different issue - but you say it is being monitored, so you can relax about it.
To answer your questions about my coeliac disease - I had symptoms which started suddenly 3 years ago, and was diagnosed after about 5 months. Almost all my symptoms started to improve after a fortnight, and I felt really well. In fact I felt so much better that it took me over a year to start to think that my bowels were only 80% back to normal, and I still had a bit too much wind, so I investigated, and learned that the villi damage had probably caused lactose intolerance. Once I started buying lactose free milk, and sticking to hard cheese and live yogurts, this cleared up as well. I believe my villi are now almost healed, as I can now tolerate some "proper" milk without getting windy. After being on the diet since April 2019, I now feel 10 years younger!
When you get the urge to google - try and spend time looking up gluten free recipes, and then enjoy trying them out, rather than looking for problems!
No I haven't. It has not been offered, and I don't think I would agree if it was, as I believe strongly in the importance of a healthy gut biome, and the preparation for endoscopy must damage it. Also, the endoscopy itself is invasive, and not totally without risks. It was well worth it to find out whether I was coeliac, but I don't feel it would be helpful now. I am feeling so much better that I am certain that I am doing the right thing with my diet - I don't feel the need to know exactly what score my villi get now.
Can I ask what was the score? My GI doctor wanted me to have repeat endoscopy after 3 months strict gluten free diet but my dietitian said that would be too early. She said healing takes time and repeat endoscopy usually done 6 months to 1 year. Im agree with you about endoscopy. I will also wait
I was never given a score - just told that the endoscopy showed damage and that I was coeliac.I agree with your dietician - when people are offered a repeat endoscopy here I think it is either after much longer than that
I was diagnosed last November, and am feeling so much better now, and you will too.
My adult daughter who lives with me tested negative, although this can change and she may test positive in the future.
The only new kitchen equipment I bought was an additional toaster and wooden spoon.
"Coeliac disease often runs in families. If you have a close relative with the condition, such as a parent or sibling, your chance of also getting it is increased." NHS
So, it is worth suggesting that your family are tested even if they do not have any symptoms.
I’m the first one who diagnosed. We do have digestive issues in our families,like gastrities,ulcers,colitis but not CD. So no one got tested. My mother has perfect level of ferritin iron and hemoglobin. Her B12 is normal as well,even though she has cancer. She is stage 4 breast cancer and she is on new treatment m,which 2 pills. It’s basically stops the cancer progression. My dad doesn’t have any vitamin deficiencies and his iron and hemoglobin is good too. My sister has anemia because she has very heavy periods. I had excellent levels of ferritin and iron all my life and all of the sudden it dropped. So I don’t know who might have it. They need to get tested as well. My doctor ordered celiac panel test for me, I’ve done on Tuesday before my flight. The results are not ready yet. I’m so confused. I don’t know what can I eat. I’m persian and we mostly eat rice. But I’m confused, I want to see nutritionist and dietitian as soon as possible but I don’t have access to them since I’m in London now. I can ask my doctor for referral and see if I might have online appointment. I stopped my antidepressants,because I googled and it says that all medications might have hidden gluten. I hope my son will have negative test results. I know it’s 50%. Very challenging year for me:((.
Medicines here tend to be Gluten Free. You may be able to look them up on Drugs.com. I think you may have to set up a password (I can't remember), but lots of people use it to check drug interactions etc Or, you could take them into a pharmacy and ask if the pharmacist can tell you.
Rice is obviously good. You should probably get some flour for cooking......the most used brand here for Coeliac is Doves Farm which you can usually find in any of the main supermarkets, and has 'Freeee' written across the front of the packet.
Our 'ingredients' lists on the packaging of food products have to put allergens in BOLD lettering, so Wheat, Barley, Rye, Malt are quite quick to see. Eating in restaurants is more difficult.......the general advice is to phone ahead to make sure that they can cater for you, and speak to the kitchen staff when you arrive too.
Quite a lot of us are lactose intolerant when 1st diagnosed, but this tends to get better after a few months. I couldn't eat seeded GF bread at first, but I can now. I would recommend gentle foods like chicken/fish with vegetables rice/potatoes for the 1st few weeks then think about expanding your diet.
I'm so sorry about your Mum, and hope that her treatment is working well. Sending hugs 🤗
Oh dear lady, you are not hypochondriac, you are afraid. That is perfectly understandable. Coeliac disease is easily controlled as long as you are very consistent in sticking to a
Dearest Saba, be kind to yourself. It is natural to be concerned, and although most of us don't voice it, we have the same fears as you when we first have a new diagnosis...the 'what if' thoughts. As long as you adhere to a totally gluten free diet you should be in control you will be able to manage fairly easily. There are so many gluten free foods around these days and more are being added to the shelves every day. It is good that you have been diagnosed early. As long as you stick to a gluten free diet, your bowel will settle down and, before you know it, the diet will become second nature to you. After your visit to London, why not seek some counselling to help you deal with your anxieties. Hang on in there, and love yourself a little more. God Bless, take care, and enjoy your visit.
Oh it was a spammer, I was cautioning against buying the thing they were advertising, but it looks like the spam post has gone now and I'm out of context 🙈
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Celiac Lifestyle habits
Tested positive for celiac disease today, what next?
New here, can anyone offer any guidance please?
