Gluten Free Guerrillas

Any advice for 'waffly' questions listed below, would be gratefully received. As getting fed up with being fobbed off by GP

Hope someone can shed some light onto the why's of the following questions. Why do I still feel so ill? My energy levels seem non existent- I have to pace my activities for my day/week. Ferritin/Hb count continue to be low (Ferritin ranges between 4-10. Hb between 6-11) icy cold hands & feet. when stressed/ gone too long between meals & having just eaten. As still go on melt down & concentration levels affected by these also. Continuing stomache/bowel problems- fluctuate between impacted/severe bouts of diarrhoea. Painful bloating.

Prone to UTI's/Kidney infections? Never had a Endoscope-just blood test positive for CD. I'd had a 18 month experience of Severe Asthma-no control despite oral steroids & 3 different Inhalers & night time meds for mucus prodution control. Link was later made by 'locum' Dr - of symptoms. Who had requested range of tests- gyny biopsys/ scans & blood tests. Paramedic intervention/blue light trips to A&E & time spent in Resus- all following days when not hungry- so just had sandwiches! Or friends had given me cans of Guiness to sample- to boost my Iron levels! So hope 'you' then understand my reluctance/ argument with hospital consultant, who had insisted on a 6 week Gluten diet for Endoscopy. Test- to 'Just' confirm blood results. Turned argument around by asking- Have you ever known a patient have a blood test score as high as mine & not be a Coeliac? Response had been - No! Recent Colonoscopy/ Biopsy have come back 'normal' but symptoms persist? I am 50 years old- diagnosed in mid 2005. Have had Arthritis since 18yrs of age. Gp suspected IBS in my 30's. Asthma still present though better controlled/managed through daily meds. Action plan in place & self checks of peak flow. Had breakdown/ burnt out in late 2009. My Son- who has SLD & Autistic

Had, had a severe allergic reaction to medication. Spent almost 6 months on a Neurological ward- 4 months in a Nursing Home 40 miles away. Took months of arguing/pestering for tests & 2nd opinion. Before his diagnosis made. Now has permanent Physical Disability/due to miss diagnosis & faliure of intervention meds being given. My 'burnout' occurred after his return to his Specialist Autistic Unit. Which now prompts another question- Are CD ..flare ups/have episodes of intense itching. Blisters to just 1 foot after family/trauma's & dramas etc affected by Post Traumatic Stress Disorder- which is my 'latest' handle! Sorry for waffling on! But GP isn't looking at the whole picture-

10 Replies

Blimey <rolls sleeves up> :-)

Why so ill? Well CD, whilst eating gluten prevents your body from absorbing essential minerals and vitamins. Also undigested food passes into the gut where it ferments, producing gas (bloating) and I believe by product is a mix of alcohols, one of which, methanol is toxic in large quantities but will make you feel ill in small quantities.

Energy levels can be low in coeliacs - need to ensure you have a good carb intake from non-gluten sources (rice, potatoes, corn, etc - be careful with sugar as this can cause insulin peaks and troughs as your body copes with large intake of sugar leading to fluctuating body sugar and energy levels).

Given your age some of the damage to the villi in your intestines may be permanent (not unusual in long-term coeliacs) so some symptoms may persist even after going GF. Check also that there are no other immune reactions; I, for example am allergic to milk but only discovered this after I kept getting odd symptoms similar to CD when GF. In my experience, most coeliacs have other immune system issues - other food allergies, asthma, eczema not uncommon.

I found my asthma got better after I gave up milk.

But gluten and dairy free is a real s*d to cope with....

Keep fibre levels up - ensure you have a mixture of soluble fibre (fruit/veg) in addition to insoluble fibre (brown rice, bran, nuts, etc). This will help keep your bowels more regular.

Don't be bullied into the endoscopy unless you doubt that it is CD. I had a fight (see my profile) and never had one largely as there was a cause and effect situation and family link which the gastro specialist was happy to confirm CD upon.

There is a related CD skin condition called Dermititis Herpetiformis which can present as a rash/blisters.

Sounds like you have a sympathetic doctor - so stick with them!


; D. Thanks for rolling your sleeves up on this for me Meanioni! Have been with this Drs practice since 1989..So have built up a good relationship with my current GP. She has reviewed my meds & followed up on the gyny side of things & abdominal checks in the 18months I have been under her care. By also prescribing a daily dose of Omeprazol as believed meds that she had reviewed/swapped had stripped my stomach lining. Previous GP had put all my symptoms down to Depression/ the stress I was under due to Son's illness - prescribed Prozac & then Tramadol, for my increasing problems with Arthritis. I have been on a strict BROW free diet since 2005. I receive GF bread/white mix/pasta on prescription. But no one had mentioned the fact that damage maybe more permanent due to age on diagnosis. Only saw dietician once for GF/iron & calcium intake advice & a Diabetes nurse for advice about managing the peaks & dips in body sugar levels. It was the Diabetes nurse that made me 'laugh' as advised me to increase my cereal intake....when I pointed out my CD, she had replied 'well surely you can eat a little bit?' ... Only if I wanted to end up with a little bit of bowel cancer years down the line eh! Will attempt to chase up other immune checks. Thanks again for replying & break down of advice : D


Yup damage can be more permanent - the villi (microscopic projections in your intestines) can became permanently blunted or flattened. One side effect of this as I understand it, is that as well as more permanent CD-type reactions, the area of the villi that produce lactase (the enzyme which helps digest lactose in milk) also can be permanently damaged, hence causing a CD-like reactions - undigested milk sugars pass into the gut and ferment, producing diarrhoea, bloating, IBS and feeling like cr*p. :-(

Important to keep iron/calcium levels up but ideally through food rather than supplements - supplement any calcium/iron-rich foods through consumption of something containing Vitamin C (orange juice, etc) as this helps "fix" more of the iron/calcium.


Thanks Tony62, have been noting my pattern of reaction type incidences for sometime now. So now know eggs can be a trigger. Can occasional tolerate scrambled, but not any other form. Know also, that being female & hormone swings/peaks can play their part too. So the release from all that & end of menopause, is something I am welcoming...tho that will open another can of worms where the arthritis is concerned I guess! Ty again.


Will try the antihistamine tip- as altho on asthma meds, also have a lot of sinus/ facial puffiness on occasions.. Step down inhalers when I can but daily peak flo checks can show a score drop of half. From 1 day to next. Chest clinic Consultant said the previous history of long term chest infections had possibly caused some damage in their own right .


I could not agree more...I paid to see an endocrinologist as I was sick of my GP here in Greece telling me it was all down to my age at 56! He couldn't even find my thyroid, he was looking in the wrong place so I told him he needed to Google it...that went down well LOL

I agree you need to look for hidden sources of the gluten, its amazing how little can knock you out of sorts for days. Have you had your thyroid tested with blood tests? There is a strong link between celiac disease and thyroid problems.


Hi Karen, well first of all poor you! my first thought when I read this was Lupus. There is a type of Lupus which is triggered by med's (drug induced Lupus)

It also affects the lungs, skin and the joints. This is very simplistic and I would Google Lupus and Lupus and coeliac. There are also members of GFG who have Lupus. I have a very bad reaction to med's and have sufferred from severe inflamation of the kidneys.

So I would go back to your Gp and ask for further tests on related immune dissorders to CD with this in mind.

Your low iron levels stomach prob's may be due to you being very sensitive to gluten and foods like codex wheat may be upsetting you so in my opinion it's worth discussing an elimination diet with a dietician. And keeping a food diary.

Lastly good luck and please let us know how you get on and I am not saying that you have Lupus just trying to make you aware of the link with coeliac.



Thanks for the 1st comment Jerry, I had started thinking I was becoming mardy & showing signs of hypochondria! Just good to know my concerns are not groundless & the feeling that something may well be, being missed. My previous GP had referred me on to the Condition Management Team. Which altho had some useful advice as to pain management- had been the victim of bad assault- handbag theft of orbital proportions- 4 ops for facial injuries plus dental work for the 6 teeth I also 'lost'..did find 2 of them in my bra when I eventually arrived back home from A&E! Courses also gave me official permission to say No to family demands on occasions & the importance of 'me' time. As I had generally started to feel I was well on the bendy road to going crackers & on the loop-the-loop stage of my training course! : D. I I have spent sometime 'googling' symptoms etc & had seen the Lupus similarity of symptoms. Will give me confidence to print off & take with me to my next GP check up. Have appreciated the time spent by yourself & the others who have posted their replies. Wish I had known about this site when 1st diagnosed- Or better still before. As may have leant to an earlier diagnosis. Has made me look again at my Mum's health issues over the years. A family tendancy towards Anaemia - Rheumatics- Arthritic symptoms & my own childrens health & food issues as they grew up. My Son who is now 27yrs-, used to react to Wheatabix, all 'green' vegetables, Pork, Eggs & Full cream milk? My daughters are 25 & 21. The eldest at 13yrs had a bad case of food poisoning after a family meal out. Lost 3 stone in less than a month. Developed IBS as a result. She has struggled with maintaining a heathly weight ever since. Is now the Mum to 2 of her own. Had difficult pregnancies & low birth weight babies. Despite all this, her GP recently told her-

'We can't afford the tests, it would take. To find out what's wrong with you!' Keep up the great work folks. Ty again. Carona


Hi Carona, I'm really sorry about the handbag snatch and I am very sorry that someone dared to put you through such an ordeal. All I will say is not all strangers are bad or have bad intentions. The only good thing that I can say about it is that you lived to tell the tale and you are obviously a plucky lady and this is all very sad.

It also saddens me that your duaghters Dr said they can not afford the tests? what a cop out, methinks.

Going back to your original question I would also look at ''refractory coeliac''

And thanks for sharing this with us.



Thanks for words of support- had been umming/arring about posting on the page. As didn't know if issues were down to me not dealing with life style change.. or if it was a case of me having to chase up concerns with GP. Also in part- have had years of fighting battles on my children's behalf. That when it comes down to doing it for yourself. You find you are less inclined or driven. Thanks again for the advice & time spent doing so. Will get back to you after my next GP check up. Hopefully I will get a few more answers to share. Carona


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