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UKGail

Member Since 29 Aug 2011
Offline Last Active Oct 10 2012 09:11 AM
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#797976 Gluten Challenge Not That Bad

Posted by UKGail on 24 May 2012 - 03:18 AM

I finished a 2 week gluten challenge just over a week ago. After suffering from a worsening of headaches, body aches, stomach aches and severe fatigue just from exposure to gluten being cooked or toasted around me, while I was gluten free and recovering, I was really nervous about about doing a challenge. The first week was ok, with just abdominal pain and achiness which would pass before the next dose of gluten, and my energy levels held up.

During the second week though, the body pain and fatigue gradually kicked back in. Each day I felt worse than the previous one. The brain fog started up again too. By day 14 (a Saturday, so no work) I felt so bad, I just sat on the sofa all day doing nothing, and on Sunday I had a major migraine, D, major stomach pain and nausea, swelling etc. I couldn't eat a thing and retreated to bed for the best part of 2 days. Then I had to do the bowel prep for the colonoscopy, so didn't eat again until late Tuesday.

Was back at work on Wednesday feeling much better, having fasted for 3 days, and then returning to the gluten free diet. The abdominal pain and headaches took about a week to subside. Skin itchiness and breakouts still haven't quite got there, but they are improving. Ditto bloating/swelling and what I think might be lymph pain. Fatigue and body aches are still a significant problem, so it might be a while longer before I fully bounce back.

So the symptoms of a gluten challenge can build up quite subtly, and equally take a while to get back under control again. It is not something to be undertaken lightly. I felt that I couldn't have swallowed another mouthful of gluteny food by the end of two weeks. And most doctors seem to say that a gluten challenge should normally be for up to 3 months. Torture!
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#794879 It's Unfair

Posted by UKGail on 11 May 2012 - 11:33 AM

So sorry to hear about your husband's diagnosis. I understand how you feel about this but, like other posters, think that life is definitely worth living, even with either or both of these disabilities. You are both starting on your journey learning how to manage them, which will ensure that you will both eventually make fine parents to any children you may have. My family is riddled with celiac cases, discovered only relatively recently when we all successively hit middle age, despite some of us having symptoms since childhood or the teenage years. The challenge surely for the next generation is to take the knowledge of an inherited risk, and be alert for and manage any symptoms as soon as they appear (or even be healthily gluten free as a precaution). Think of the general good we can all do with this early knowledge, rather than not have children, and let out of date doctors continue to fail to help other hard to diagnose sufferers.

I don't know much about Tourette's, but if you accept the emerging medical thought that gluten sensitivity might be an autoimmune disorder of the central nervous system, a possible link is not at all surprising.

I have been doing a gluten challenge for the last 2 weeks prior to an endoscopy and colonoscopy next week (after having been gluten free for 6 months). As I am sero-negative this is the only way I might ever get a formal diagnosis of celiac, which I would prefer to have to help my children (and other relatives) manage their health. I can verify that anxiety and mild depression is part of the symptom picture and that 2 weeks of gluten is about all I can take. I am looking forward to returning to my "normal" gluten free diet next week, irrespective of the endoscopy results. I know you haven't been gluten free for very long, so you may well still feeling very up and down about anything and everything. So now is probably not a good time to make any final decisions about life. Hopefully you will feel happier soon and, with luck, your husband might, in time, come round to eating the same way you do and might feel better for it.

PS my husband says he also has Tourette's. But only when someone annoys him and he can't stop swearing under his breath! Seriously though, his family has depression and stomach and bowel cancer issues. Hardly classic celiac symptoms, but after having been gluten lite alongside my gluten free for 6 months, he is now getting stomach aches and headaches along with the gluten meals for my gluten challenge. Yet he won't hear my suggestion that he might possibly be gluten sensitive. I've had to drop the subject, but all our meals at home are going to be gluten free again very soon. If he wants to eat gluten at work, then that will be his choice.
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#782935 Adding A New Food

Posted by UKGail on 26 March 2012 - 04:12 AM

I'm watching the carbs, but need some or I keep losing weight. Sweet potatoes are my main carb, and I have zero reactions to them. I might have rice once or twice a week, and that seems to be ok too. I have been trying potato, but am not sure about them just yet. I keep making the mistake of expanding my diet too quickly because my appetite comes roaring back when I feel better, and I get the munchies really badly. I paid for my ill discipline last week with a migraine and severe nausea over the weekend, and I have no idea what the culprit was. Ho hum, back to basics again!

Glad you had good news Dani!
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#782922 New

Posted by UKGail on 26 March 2012 - 01:18 AM

Weluvgators is quite right. I overlooked this aspect of your posts. I haven't had allergy testing done yet, but am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms, whether it is just addressing the minor daily aches and pains and sinus issues, or the extreme nausea and vomiting of a glutening. It seems to help with both. Zantac helps too. I find the latter is better if I have acid pain in my stomach (which is now unusual for me), and zyrtec better if there is no acid pain.
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#782515 New

Posted by UKGail on 23 March 2012 - 02:40 PM

Sorry, there are no quick fixes. When I first started out, I quickly found that plain, homemade soups (with meat broth or stock and veggies) were the most soothing thing to eat. For a while I couldn't handle anything fatty, and just stuck to soups, slow cooked plain casseroles, and grilled meat and boiled veggies. Go very easy on gluten free baked goods until you feel better. For me digestive enzymes helped a lot. Probiotics were also a big help. Maybe some multivitamins too if you are deficient in anything, which is likely, but don't add too many supplements to your diet in one go, do it in stages to give your body time to get used to them.
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#782438 New

Posted by UKGail on 23 March 2012 - 02:48 AM

In our extended family we had what we thought was a predisposition to lactose intolerance and various other allergies. We also have thyroid problems in the family too. It took 20-30 years for all those lactose-intolerant people to be diagnosed as celiac (all of them without exception!). Please encourage your daughters to be tested too. If your diagnosis is confirmed, which seems likely, you may wish to remind doctors that even if your childrens' blood tests come back negative, they ought to nevertheless consider proceeding to endoscopy, given their family history and their lactose intolerance. Have your doctors also planned a bone scan for you to check for osteoporosis? This is very common in those who have been undiagnosed for a long time.
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#779055 Friends Purposely Glutening Me!

Posted by UKGail on 07 March 2012 - 02:33 AM

I remember belatedly reading your last posts about this topic, and not liking it then. To see you coming back a year later with the problems getting worse rather than better is even more concerning.

Other posters have given you some really good advice about ways to protect your food, and techniques to deflect the uwanted attention, and I have nothing to add to them.

What I do wish to say is that as a mother who works in a school and with our local church group which also organises trips away, I am OUTRAGED that this behaviour and the pastor/organisors and your parents are not taking firm steps to put a permanent stop to this outright bullying.

If the behaviour has not stopped now and has indeed worsened, even after you have talked to the leaders previously, I would be seriously considering whether this is a group with which you wish to be involved. Of course, you may be living in a small community where there is not much choice available, in which case your choice is whether to continue to carry on with your church activities or not. You may also be attending the same school as these unpleasant people. This is a rock and a hard place, but life is sometimes like that. You may find however that there are nicer people elsewhere with whom to spend your time.

I advise having another talk with both your parents and the pastor/youth group leader prior to the trip. Ideally your parents should also attend the meeting with the pastor to support you, and also to emphasise the serious nature of the bad behaviour. It is bullying, and any tampering with your food is some form of criminal assault. The trip leader is legally responsible for your health and safety while you are in his/her care. If you are made sick during the trip by the actions of some of the other participants, and he/she was warned in advance that such behaviour was likely, then you or your parents could take some legal action against him/her or against the Church for negligence. Your parents could point this out to the leader in the meeting. Then, in a pre-trip briefing to the participants, the pastor should mention to all that you need to bring your own food with you for medical reasons, and that this food is not to be touched by anyone else. He does not need to make a song or dance about this, but it does put the others on notice that they cannot rely on leadership indifference to their behaviour.

What you are suffering is not normal behaviour and you really need to find some assistance in getting it stopped or getting away from it. I cannot tell you how upset I am at the situation find yourself in.

I wish you all the best, and would like to give you a big hug for moral support.
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#775260 For The Older Ladies W/o Gold Seal Dx

Posted by UKGail on 22 February 2012 - 03:22 AM

My periods stopped at age 44, after I had been feeling unwell for some months, with, including other things, hot flushes and low sex drive. A gyn doc diagnosed ovarian cysts and gave me a short course of hormone for them. The cysts resolved, my periods restarted, and the hot flushes died away. At the time I was had started eating a low gluten diet, and a GI biopsy came back negative.

Fast forward another 1-2 years of eating a lot of gluten (a GI having told me I didn't have celiac!), and worsening health problems. The hot flushes gradually came back, and my periods stopped again. Blood tests "confirmed" that I was "post-menopausal" at age 46. I went fully gluten free as a trial under the care of a rheumatologist. Within a few days the hot flushes stopped completely, my periods restarted, and have been perfectly regular in the 5 months since then.

I am convinced that my female problems are linked to my gluten sensitivity.
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#771762 Undiagnosed With Questions

Posted by UKGail on 08 February 2012 - 04:55 AM

Hi Dani

Doctors like getting you diagnosed as they think that celiacs need to be very strict about the diet to avoid further health problems. They currently think that people with non-celiac gluten sensitivity may not need to be quite as strict, and may even have a level of tolerance to ingesting small amounts of gluten. However I haven't managed to find any research to back this up, and many of us think that doctors are simply missing many celiac cases because of problems with the testing (or simply not testing when they ought to). Given the wide range of symptoms experienced by diagnosed celiacs (from near-death to completely silent)you could argue that if you have observed any form of gluten sensitivity, strict avoidance is less risky.

A formal diagnosis also helps other family members get tested, as medical guidelines encourage the testing of first degree relatives. Celiac disease is strongly heritable, and one day you may need to have your children tested. A diagnosis also helps to stop other family members thinking you are simply odd to avoid gluten for no reason validated by a doctor!

As for the ongoing stomach aches etc - well, it just takes time to heal. Until you do, it may continue to hurt for a while.

Continuing to consume lactose won't help you heal. Lactase to digest the lactose is produced in the tips of the villi. If these are damaged by celiac, you won't be able to digest it. I don't know if consuming it will actually set you back in healing, but I personally feel it is likely, albeit not the same extent as gluten ingestion. I tried some hard cheese for the first time yesterday (after 5 months gluten free), and it just gave me stomach ache, gurgling and bloating. Not as bad as a gluten reaction, but not helpful either. I'm going to continue to avoid it for a bit longer. I agree it is tough for you though, if you are trying to eat while travelling, and dairy is in most of the local food. I hope you enjoy your trip despite your discomfort. It is a fascinating area of the world.
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#770010 WW II Every Night At Dinner

Posted by UKGail on 01 February 2012 - 10:23 AM

I agree with Richard. The most important thing is to stop meals becoming a battleground, as the emotion of the battle can easily overtake the need to eat. Give her a small meals, plus regular snacks. No options. No pleading if she ignores the lot, just take it away after a reasonable time has elapsed. While she is eating, if it just her, you need to be doing something else in the kitchen and not watching her, unless you are both just chatting together. If she is joining you in a family meal, then it might be best if you all ate only foods that are ok for her, so she doesn't feel like she is being stigmatised.

My elder daughter was also very picky. With hindsight she was a natural paleo diet person, eating large amounts of vegetables, especially raw vegetables/salad sticks, tuna and some meat, and hating carbs. In ignorance I didn't give her much in the way of fat, so she was always very small and slim. When she went to school her teacher thought I was an awful mother because she would happily take in a raw carrot for her snack, where all the other kids had crisps or biscuits in their snack boxes. She had to have a packed lunch from me or she would completely refuse the food served by the school. Once she hit puberty she discovered crisps and biscuits, plus pasta, bread and potatoes to some extent too, so she grew well over a foot in a very short space of time and filled out. She now looks like a normal 15 year old, albeit still a bit shorter than average. She is still a devil to feed though.

Be patient, and calm, and you will both get through it. At least you know what your child's problem is. Mine is almost certainly gluten intolerant to some degree (we know she is lactose intolerant and allergic to chocolate), but has stated she doesn't want to have to give up the gluten goodies, and she is now too old to have it forced on her.

Best of luck!
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#737810 Ugh! Is Anything Safe?

Posted by UKGail on 11 October 2011 - 06:56 AM

IrishHeart, your post made me smile as it is such a good summary of my experiences for the last 6 or 7 weeks since my diagnosis, including the list of weird reactions to many foods. In fact it is so good I have printed it off to take with me to the docs tomorrow for my first post-diagnosis follow up. I intended to write up my own notes for the meeting, but am still having difficulty concentrating, so it's a big help. I hope you don't mind!

After 6 weeks or so, I still find (through trial and error) that nothing beats a hearty home-made soup or slow-cooked stew for soothing a sore gut, while getting some much needed nutrition into my body. Everything else is second (or third) best, and many foods are still on the forbidden list for now.

While it is hard to be patient with the slow healing progress, it is better than the stomach pain, fat malabsorbtion, D, headache and fatigue that still results from being too ambitious.
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#734745 Biopsy Negative....now What?

Posted by UKGail on 28 September 2011 - 06:55 AM

I tested recently negative to the celiac panel blood tests and a couple of years ago to biopsy. However my family history (half of my Mother's family are celiacs) and symptoms, which are responding to the gluten free diet was enough to convince my rheumatologist of the diagnosis. He is a lupus specialist who is used to diagnosing lupus and similar autoimmune disorders on the basis of symptoms which are not always reflected in the blood test results, and was willing to accept that celiac disease may also present in atypical ways. Not all doctors will do this.

Also biopsies do not always find the damaged areas, which may be patchy, or the damage may be further down than they usually look with the endoscope. Doctors also dispute amongst themselves what level of mucosal damage qualifies for celiac disease.

There are also medically proven neurological forms of gluten sensitivity, which, in may cases, do not cause any damage at all to the digestive system. If you search the internet for "from gut to brain by M Hadjivassilou" you can see more details. He is a well-known neurologist based in a celiac centre in the UK. The whole article is payment protected, but a non-printable slide show version is available to read.

I would therefore not be too disheartened about a failed biopsy, and consider whether to judge your tentative diagnosis on whether you respond to the gluten free diet or not.

If I sound a little cross about this, I am as the gastroenterologist who biopsied me 2 years ago told me not to worry any more about celiac disease as I didn't have it. As a consequence I have suffered another 2 years of rapidly worsening health, which is only now starting to resolve on a gluten free diet. I am convinced that a little more humility and willingness to accept that there is still more to learn about gluten sensitivity and a little less pompous certainty amongst many in the medical profession would go a long way.
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#733174 What Symptoms Did You Not Even Realize Were Symptoms?

Posted by UKGail on 23 September 2011 - 12:55 AM

I had suffered from chronic pain in my neck and around the base of my skull since a car accident some 9 years ago. This pain vanished 24 hours after going gluten free and has not returned. A recent blood test had also shown post-menopausal levels of estrogen (the level was extremely low). My cycle restarted shortly after going gluten free. I also haven't had any migraines in the last month of being gluten free, which I had also not expected.
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