Post Positive Blood Test Asked To Go Back On Gluten

[navigator]

I'm just back from the G.P. following three weeks gluten free after being diagnosed via blood test. As my daughter has coeliac G.P. considered that enough for diagnosis. I've been struggling with fatigue since December . I come home from work and sleep, then I make dinner and sleep, then go to bed sleep the whole night and I'm so exhausted in the morning. Anyway on Wednesday I was so exhausted I just broke down crying at work and went home sick.

My G.P. has given me sick line for a month but has also told me to go back on gluten for six weeks. My antibodies were low but I'd been wheat free for six months so he expected that. He feels that after 3 weeks gluten free I should be feeling an improvement and that it maybe something else. He wants me to go back on gluten to see if my antibodies spike. Also deficient in Vit D so he's started me on a course of these. Blood pressure and cholestrol were both high so now on statins. From what I've read on this forum this can still all(with the exception of cholestrol) be answered by coeliac and gluten withdrawal.

Any thoughts. Thanks

[Poppi]

That's like telling someone who was diagnosed with lung cancer to keep smoking so they can see if it gets worse.

Rather than add gluten back in it seems more logical to keep aiming for total purity in your gluten free diet and perhaps remove corn, dairy and/or soy which cause so many people problems. Keep up on the vitamin, try to eat a whole foods diet to reduce contamination issues and rest well and give your body some time to heal.

[rosetapper23]

Two things: 1) Has your thyroid been tested? Before I found out I had Hashimoto's Thyroiditis (which, as you know, is common in people with celiac), I was so fatigued, I could barely function; and 2) Whenever my Vitamin D is low, I get more benefit from walking outside in the sun than from supplements. I still take a supplement, but I don't tend to absorb very much, if any, of it. Believe me--sunshine will help with both the fatigue and your mood if your problem is low Vitamin D.

And, PLEASE, do not consider for even one second going back on gluten. Oftentimes, after we've been on the diet for a while, the body can become hypersensitive to even the smallest amount, and the results can be devastating. You could cause your body to destroy parts of the lining of your small intestine where iron is absorbed (and you'll need intravenous iron for possibly years), or where Vitamin B12 is absorbed (and you'll need weekly injections of this vitamin), or where Calcium is absorbed (causing broken teeth and brittle bones)....you get the picture. The few times that I've been inadvertently glutened have resulted in terrible damage that is very difficult to overcome. Don't make your life more miserable, my friend--your GP does NOT appear to be a celiac expert.

[sa1937]

I simply cannot fathom a dr. telling a patient to get sick just so they can have their stupid little diagnosis (and even then it's not a given)! Maybe he should eat a little bit of rat poison or arsenic to see if it spikes his antibodies.

[IrishHeart]

No No No! No gluten for you!

Do not undo all the good you have done so far!

I wouldn't do it. Just my opinion.

It takes a while (MONTHS) to see results after going gluten-free. You are still healing.

PLEASE have your FOLATE levels checked. And B-12 too!! Those 2 deficiencies are very common with us and that is why I was so exhausted. I went in and asked to have my folate level checked and that's what it was--very low!! After supplementing for 2 months with prescription folic acid, I feel so much better!!--I am not dragging my feet around and in a stupor of unbelievable fatigue that made me cry too.

Hang in there it gets better!

[navigator]

Thanks to everyone for your advice. It's reinforced what my feelings were. When he told me to go back on gluten I replied that this was a very scary thought but he said that taking gluten for 50 odd years when I could've been coeliac was the scary part. To be fair, he did say that if I got significantly worse after adding gluten that I should stop the gluten and phone him. He tested my thyroid, ferritin, folate, B12, glucose, Vit A and Vit D. Two years ago my ferritin was down to 4 and I felt exactly like I feel now but my ferritin is ok as I've remained on a diet high in iron and there is iron in a supplement I take for menopause. The Vit D was very deficient however, despite it also being in this supplement. He has also arranged a Dexa scan which Im getting next Thursday.

The only problem that I have in ignoring his advice is to do with my employer. They have instigated disciplinary procedures and the operations manager is coming out to visit me at home in a fortnight. I struggle and go into work when I'm feeling really bad and only go sick when I just can't get out of bed or off the toilet,but because I had six days off last year it automatically kicks in this procedure. I'm a social worker in local government. Not complying with the doc could make this very difficult for me.

I eat a healthy diet - no processed food. I always cook from scratch and buy organic when I can. We eat out twice a week but again it's good quality ingredients. I'll try removing dairy and see if that helps.

Since being so tired I had stopped going my daily walks, but now that I'm off work I'm making myself do even a short walk every day. Feel that if I can get a balance of rest and fresh air and exercise it can only help.

I've also started going for reflexology and reika. I figure they can't do me any harm and may do some good.

Thanks to all of you for your replies and support. It really helps.

Isobel

[IrishHeart]

Well, aside from his suggestion to resume gluten, he is being very wise!! A DEXA scan at our age is a good idea. Bone loss is common to celiac (and in people with low D or cal/mag levels) and so, we need to monitor that.

Perhaps the supplementation of Vit D will turn things around for you.

Dairy should be avoided for the first few months. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

I know that my tolerance for exercise was low while I was very ill because I lost major muscle mass, so I know what you mean.

You will start to feel better--it just takes time. I had a hard time with that concept at the beginning, but now I am seeing that I AM doing better and it is worth it. No more living in the bathroom (hooray!) and feeling more energy every day...it will come to you as well. Hang in there!

[cyberprof]

Navigator, sorry you've been having problems. Based on your spelling of "coeliac" versus "celiac" I'm assuming you're in England. Though I don't know much about the labour (get it??) laws there, I can see why you've got to keep your doc on your side. I think you'll have to convince him that going back on gluten would only leave you more debilitated and that adding gluten back won't help him solve any other health questions, if there are some. Eating gluten-free doesn't make anyone sick or weak and if you have other problems, staying gluten-free is the most likely way to get healthier faster. Others had good ideas and I agree that you should have your Vit D, Vit B, and thyroid levels checked. Ask him to check those things first.

Perhaps you can show him this peer-reviewed medical study that shows that recovery for adult coeliacs is at least two years away and that your recovery is just in its beginning phases. Open Original Shared Link

Going back on gluten may just keep you from getting back to work, in my opinion.

[Jungle]

Cyberprof- Only 65% are all better after 2 years and 90% after 5 years. Well that would explain why I am not all better after 3 months. I guess I should just be patient and relax 'cause it is going to be a while. My Dr thinks I should be all better by now as it has been more than a few weeks.

[cyberprof]

Cyberprof- Only 65% are all better after 2 years and 90% after 5 years.

YES, that was exactly my point and the point of the article that I posted. Her doctor shouldn't expect her to be all better after only a few weeks/months.

[kareng]

My GI said I would be completely better afer 7-10 days gluten-free. He also said that even tho I was still very deficient in iron, etc, not to worry about vitamins. Probiotics, vitamins & digestive emzymes are a scam. Of course he said all this after he had already billed me for the procedure!

A couple of days later, I read an article from the GI medical journal (2 months old) that said that older people sometimes need up to 2 years to heal. I think kids heal pretty fast in most cases.

[mushroom]

My GI said I would be completely better afer 7-10 days gluten-free.

And of course, because he so pronounced, you were, were you not?

The B*S* pronounced as medical wisdom .......

[navigator]

Thanks to everyone for their replies and support. Cyberprof - you were right to pick up on my spelling of coeliac but I'm In Scotland not England. We Scots can get a bit touchy about that On my second post I've listed all the things that he also tested and I was ok except for Vit D which I'm deficient in and he's started me on a course of that.

I've decided to phone my doc today and discuss all the points that have been raised in this thread.

[mushroom]

I presume you are taking calcium along with your vitamin D. Consider taking a combination calcium, magnesium and zinc supplement, because they work well together synergistically, and because we celiacs are often deficient in magnesium and zinc. I did the zinc status test (it's a liquid that you hold in your mouth for, I think, ten seconds. ) If you can't taste anything you are severely deficient. If you get a strong metallic taste you are okay. It tasted like water to me And this was three years after gluten free. I had not picked it back up from my food. I still take lots of supplements, especially magnesium - I get calf cramps if I start slacking off on that.

Please talk to your doctor to research the healing time for celiacs. He obviously does not understand that this is not a short-term recovery..... I am three and a half years down the road with still a ways to go.

[navigator]

I take a supplement called Menopace which contains Vits A,D,E,C,B1,2,3,6 +12,folic acid, Biotin, pantotheric acid, magnesium, iron, zinc, copper, manganese, selelenium and chromium. It's an over the counter remedy and I showed it to the doc when he prescribed vit d and calcium and he said that I should continue to take this.

I have to say that I find this G.P. (think that's the equivalent of your M.D) very approachable. I had been attending another G.P. in the practice since January about the fatigue. I told her that I'd been wheat free since September due to problems I was having with bowels and stomach and she said that it was irrelevant and that it was just that I was going through menopause. Had one appointment with G.P. I'm currently seeing and he immediately said that he thought I was coeliac.

I've not been able to get through to the surgery today as it's a public holiday here and there's just a standby emergency system. I'll phone him tomorrow. I think he'll be open to looking into the research on healing. Meantime - no more gluten for me. All the old bowel and stomach problems are back and I'm so bloated my clothes are too tight.

One again thanks to everyone. This forum is a godsend for me.

[navigator]

Phoned today but my G.P. is off all this week. Feeling much worse today - last had gluten at breakfast yesterday, so I've made a unilateral decision to return to gluten free. I'll inform my G.P. next week when he's back and take it from there.

[mushroom]

Is there any possibility you could ask your old GP to order the celiac antibody testing to see if it went up while you were on gluten? It would be interesting.....

[navigator]

Is there any possibility you could ask your old GP to order the celiac antibody testing to see if it went up while you were on gluten? It would be interesting.....

I just want to deal with the G.P. I have now to be honest. I was going to the other one since last January and she was closed minded, unapproachable and unhelpful.

The G.P. I see now wanted me to go back on gluten for that reason. He was going to re-test in six weeks to see if my antibodies had increased. My test came back with low antibodies but as I'd been wheat free for over seven months he felt that even if they'd come back negative I could still have coeliac, given symptons and my daughter being coeliac.

I don't know if he'll do it now that I'm back gluten free. It's a pity that he's off this week as perhaps he would've done it today. This is my first day back gluten free. On Friday I had a blueberry muffin, Saturday a wheat tortilla, Sunday two slice of wholemeal bread and yesterday morning two slice of wholemeal bread. Fatigue worse and diarrhoea, cramping and bloating which had stopped when I went wheat free has returned.

[mushroom]

That was why he wanted me to go back on gluten. He was going to re-test in six weeks to see if my antibodies had increased. My test came back with low antibodies but as I'd been wheat free for over seven months he felt that even if they'd come back negative I could still have coeliac, given symptons and my daughter being coeliac.

I don't know if he'll do it now that I'm back gluten free. It's a pity that he's off this week as perhaps he would've done it today. This is my first day back gluten free. On Friday I had a blueberry muffin, Saturday a wheat tortilla, Sunday two slice of wholemeal bread and yesterday morning two slice of wholemeal bread. Fatigue worse and diarrhoea, cramping and bloating which had stopped when I went wheat free has returned.

No, I meant would the other GP order it in his absence?? This is probably not realistic, but I thought it might be worth asking.

[navigator]

I'd realised that was what you meant as soon as I'd posted it and when back and edited. You were obviously too quick for me!!

[ravenwoodglass]

I just want to deal with the G.P. I have now to be honest. I was going to the other one since last January and she was closed minded, unapproachable and unhelpful.

The G.P. I see now wanted me to go back on gluten for that reason. He was going to re-test in six weeks to see if my antibodies had increased. My test came back with low antibodies but as I'd been wheat free for over seven months he felt that even if they'd come back negative I could still have coeliac, given symptons and my daughter being coeliac.

I don't know if he'll do it now that I'm back gluten free. It's a pity that he's off this week as perhaps he would've done it today. This is my first day back gluten free. On Friday I had a blueberry muffin, Saturday a wheat tortilla, Sunday two slice of wholemeal bread and yesterday morning two slice of wholemeal bread. Fatigue worse and diarrhoea, cramping and bloating which had stopped when I went wheat free has returned.

Those 3 days back on gluten would likely not be enough to raise your antibodies significantly but they were enough to show you that your body doesn't want gluten. It doesn't sound like your body is going to tolerate a full gluten challenge. Hopefully your doctor will realize this and give you a diagnosis.

[navigator]

Starting to feel an improvement. After going back on gluten free diet the bowels and stomach problems stopped. Two days ago I started to feel a shift from chronic fatigue to really tired. I had my Dexa scan yesterday and will get results in about a week. The NHS dietician didn't tell me anything I didn't already know so I've booked an appointment for my daughter and myself at a private nutrionist in Glasgow next Tuesday. My daughter's coeliac and trying for a family so I thought that she might be able to help her. Getting outside as much as possible to assist with my prescribed Vit D.

Thanks again to all posters.

[mushroom]

Glad to hear you're feeling better again off gluten. It's obviously not for you Hope things work out for your daughter and that her fertility returns In Scotland the sun shounldn't cause you as many problems as it does down here with the ozone hole

[navigator]

I was back at G.P. yesteray and told him that I only lasted a couple of days of gluten and started to improve once I went back to gluten free. He told me that he supported my decision. I found the nutrionist helpful (if very expensive!). I'm currently on a 28 day programme with the first 14 days focussing on gastrointestinal healing and the second 14 on enhanced liver support to assist with leaky gut. I've been slowly improving since last post but the last three days there's been significant improvement and feel better than I've felt for a long time. I've been on sick leave since 25th May but going back on Monday. In order to assist the healing process I'm going part-time in August. I would've preferred to go back on part-time but this was the earliest that I could get and work was pressurising me to go back. I decided that as I have a date to reduce my hours that I would be able to cope short term.

My older daughter was also diagnosed with coeliac yesterday. She's now 25 and was diagnosed with IBS when she was 14 although no medication helped her. Seems so obvious now but I just had no awareness of coeliac then.

[T.H.]

So glad that your current GP is so good at listening to his patients and pays attention. And congratulations on finally starting to see some improvement!