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Member Since 15 Jul 2008
Offline Last Active Mar 06 2009 03:38 AM

Posts I've Made

In Topic: 6 Months gluten-free Still Have Antibodies

01 March 2009 - 11:05 PM

Diane, I would say that eating burger meat, unless specifically prepared gluten-free is a good place to start. If you eat burger meat, are you also eating sausages etc. Any mixed or processed food is somewhere gluten is often found, even before you look into things like toothpaste, cosmetics etc. The rigour required to get and stay gluten free is major. I would say that you need to track your clinical symptoms closely or perhaps other tests like anemia etc and not just be guided by the antibody test. 6 months is not that long given others experiences in healing. I have been gluten free (aside from with some accidents) for 8 months, my antibody tests are negative, and I have not had scopes done because I went gluten-free and am not prepared to do the challenge tests. My measure of success is my health with indicators like stools, skin, weight loss, immune system. The diet change has improved mine immeasurably. I also find a danger point after a few months in beoming more adventurous with foods. Finding foods that are supposedly gluten free and not keeping my diet and symptom diary as strict means that I might miss other related issues (I also react to certain nuts, lactose, yeast etc) and although these might dissappear once gluten issues get fixed, there is a certain amount of risk involved when experimenting with new foods or reintroducing.

I share your frustration with the challenge of what you are doing and the period of illness leaing up, yet look at the positives. You have a culprit, gluten, and the means to avoid it. Allergies to pollens and dust etc are far harder to avoid. If you succesfully avoid gluten for the next few years recovery can be complete. The downside of slipping back into a gluten lifestyle do not bear thinking of, so embrace the positives of where you are. Things generally get beter from the initial diagnosis.

In Topic: How Long For Pain To Subside And Pale Stool To Return To Normal?

02 February 2009 - 01:21 AM

Just diagnosed, postpartum (8weeks), post surgery and 43. Have been on a gluten free diet for a week - since last Sunday (at least I think I'm gluten free) and still having intermitent sometimes severe pain, extreme weakness, coordination issues/hazy feeling and pale stool that has not improved significantly. How long to wait before worrying that the symptoms are attributable to something else? When the doctors say 2 weeks, do they mean it will take 2 weeks to see any change or 2 weeks until you feel better???

Thanks so much in advance for any input!

Let me add my pennys worth here. My experience was mixed as I began by removing candida from my diet, however this was just a side issue. Gluten compromises the gut and allows candida to overgrow, it can also cause lactose intolerance. I agree with all the others comments that people are different, heal at different rates, have different reactions. My suggestion is that while remaining gluten free, and gluten might be the underlying issue, do not rule out related problems. Over time they will also improve but no harm in being aware if you react to yeast products and sugars that feed candida, or issues with lactose that cause their own symptoms. I am gluten-free for 6 months and yeats free for a year and have improved greatly, but it took three weeks for me off gluten to see real benefit, but improements keep coming. I suggest you consider seeing an iridologist to check the state of your organ systems, adrenals, liver etc to se if they need some help to detoxify.

In Topic: What Symptoms Are Reliable Indicators For Recovery

31 December 2008 - 07:54 AM

Hi tmb

You seem very well educated on the particular manifestations of your ordeal with gluten, but I thought that I would mention that I saw some marked improvement in my skin immediately after beginning to take a supplement from Vitanica called the IC Blend. I'm assuming that the copious amounts of Vitamin A in it are what made the difference, but I suppose it could have been some of the other ingredients.

Also, I've been taking 4000 IU of Vitamin D daily, and I wonder if that's had an effect on my mood. My energy has been MUCH better since taking an iron supplement - a very recent test indicated that my ferritin level was through the floor.

I know that some docs are reluctant to do lots of testing for fear of "treating only the symptoms", but in my experience it's been very helpful to know precisely which vitamins and nutrients I'm low in so as to speed my recovery process through judicious application of supplements and creating a tailored and pretty fabulous gluten-free diet. Here's to leafy greens!

Hi gluten-free A, thanks for the comments.

My skin was also aggravated by eating cashew nuts, so these got dropped from my diet. To stop the itching I used a herb called Sasparillo, and it also operates as a blood cleanser. This worked really well after a few days to stop the itch, and I used pawpaw cream on the lesions. Also used a mix of almond and jojoba oil for the dryness.

I was told by a naturopath to go easy on vit and mineral supplements as these tax the kidneys and iridology showed that I had stress in kidneys, pancreas and adrenals. He suggested I make sure my diet is varied and let my body heal itself. I have mostly avoided blodd tests for the past couple of years, atho I had thyroid and IgA tests a few years ago. My iridologist seems to pick which organs are stressed and gives me herbs to help heal them. This has worked well. He did not pick gluten as an issue, but when I suggested it might be, he agreed I should try a gluten-free diet (he also turned out to be celiac himself). He also did not pick the issues with candida, but supported my approach to eliminate yeast from my diet.

I get the impreesion from others and my own experience that its important to be patient and stick with the diet for at least 6 months to get a clear idea of the improvements. And hope for improvements over a few years to come. Slow but positive.

In Topic: Does The Spouse Really Understand

26 December 2008 - 05:33 AM

I think the issues that celiacs experince from family and friends around a basic 'just do not get it', is actually multifaceted and we end up getting short-changed at every turn.

It is a complex condition and not as visible as many other - heart attacck, stroke etc that appear to have binary characteristics, and more importantly can happen to others (not just weird celiacs). Even those that have it often understand very little around the disease and getting your head around the diet takes a long time even for the sufferer.

I think our parents react in very definite ways. Aside from the above hypochondriac type perspective, our parents have fed us for most of our lives. We are now effectively saying that this food might have been slowly killing us. Parents are responsible for ensuring many things for their children, and food is a very directly controlled part of this. (exercise, schooling etc are but there is a greater element of the child having some responsibility in this achieving good school results - whereas when parents lay food on the table, kids take it on trust). I think many parents are unable to accept that their children are unwell from eating the good wholesome, wholegrain breads that their parents made sure they ate, and now suffer for this. It is easier for parents to imagine the whole thing is faddish and psychosomatic, that way they carry no responsibility. This issue can also affect a spouse, especially a wife. Here again, there is pride in producing healthy meals for the family, and husband, now you face that it has been slow poisoning instead.

I am offering this perspective from my own experience and others, not because it directly resolves the issues of close family members attitudes toward celiac disease and diet logistics, but because it gives an idea of where some people are coming from and why they might not easily accept things that seem obvious to a celiac.

My approach is be blunt. I do not think it useful to be dramatic, however if a celiac does not eat correctly they will die younger and have a poorer quality of life - thats the bottom line and I have spelled this out to my family in no uncertain terms. I challenge their competence to make medical judgements when they question or doubt aspects of the condition. Once again, its not difficult to judge if a person has the training or direct experience to make valid comments on something we have lived with and learned the hard way. Often discussions about celiac disease (many other things too) center around the specifics and why it is (or is not) a certain way. I go straight to the person and establish if they are able to hold a competent opinion on the subject. If not, I have no issue educating them, as long as they respect my role as a teacher and understand that relative to them, I am the expert.

Perhaps this seems unnecessarily harsh and confrontational with direct family and friends, yet if done with passion some people need a quite a shake-up to get over some of the obstacles that prevents their grasping the gravity of the illness. I genuinely believe my wife was unable to project the long term issues for celiac disease, so I spelled them out - help me now or face a future with a sick husband/father prematurely dying - this took some uncomfortable sessions, but they took us a long way to a workable solution. My kids might also have celiac disease, so the same long term prognosis needs to be made clear so we do not face the guilt when they become sick adults.

My in laws and parents are more fixed in their views, but have also come to accept more. Few people will ever see it through the eyes of a sufferer, unless they are one themselves, so I dont expect too much, but tiptoeing around the issues does not seem to work.

I could scream sometimes when someone tells me that 'just a bit of chicken stock' surely could not hurt! Its a good time to ask how they think they might know something like this, and also check back in a few days to report that indeed my body did react, but it was useful challenge test for my tolerance levels! Next time please trust my judgement when it comes to what does or does not affect me.

As an aside, although my friends are as ignorant as my family on celiac disease, they are usually far less resistant to being enlightened, and usually take my comments at face value. I spent far too long taking the hard way out, and eating suspect foods because it was easier than making a song and dance. Now I am quite firm about checking with restuarants and hosts and feel very little if I either bring my own food or insult the host by not eating part of their meal - my ill health is not the best option for me. People seem to want to get me to fit in, or feel sorry for me that my food has no flavour and just wish I would add some tasty glutens. Once again, I tell them to trust my judgement, not theirs.

Wow that was a good moan session. I feel a lot better, nothing like a gluten-free soapbox.

In Topic: Lactose Intolerance

24 December 2008 - 04:05 PM

Hi katy, you said this

Thanks for the thoughtful reply. I realize this is a process- a much more complicated process than I first thought. It is an entire lifestyle change and I do have a good attitude about it but it isn't always easy! I don't have any problem giving up whatever I have to- My health is important to me so it's a no-brainer. Still, there is a lot to learn . This forum is extremely helpful- I'm so grateful for this community. The diary is a smart idea. I will do that.
Thanks again.

As a suggestion for a food diary (and there are different formats that you will find if you google the internet), the one that works for me looks something like this.
I use MS Word table and set up a symptom diary of very possible symptom I experience, skin, gut, energy etc, and take a checkpoint as at my start date. I make my symptoms as descriptive as possible, and easily comparable to how I might compare them in a months time. Its a simple table with perhaps 15 symptoms (even fingernails spots, dry skin, general state of stool etc). The other axis is dates so that I can check them all again in a months time and over 6 months I get a good idea of my overall recovery.
I then have a food diary with a column for each meal a colums for stool, and another for general symptoms. This allows me to track at a micro level how anything I eat might affect my immediate symptoms, stool etc and how long it takes to show.

As long as you update the diary every day or so, you will quite easily work out what does not work for you and what level of reaction and how long it takes to show and clear.

The two levels of table allow you to assess overall progress as well as learning what you react to, over time it becomes quite easy to pick when things change in your diet and cause problems.

Good luck

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