Dh Celiac, I Maybe Milk Intolerant, Help!

[RollingAlong]

I don't think the Topa has had enough time to show you what it can do (besides tingle....)

Hang in there!!! I am rooting for it and for you! From your comments about fragrances, it seems like an excellent choice (neuronal stabilizer)

After I went gluten-free, I seemed to be getting allergies. Tests showed they are to formaldehye are phenols (basically, fragrances). I think my new wow-za aircleaner from austin air has also helped with brain fog/headaches, but it is kind of hard to be sure. The out-gassing tends to be lower when the humidity is lower anyway. So I'll know more as we head into summer.

I am also taking allergy drops (sublingual immumotherapy) to hopefully get rid of these alllergies, but it could take up to 5 years, if it works at all. My expectations are low, but since new carpet and other building materials make me very sleepy, it seemed worth a try. I think the air cleaner is helping because I am not over-sleeping, a pretty sure trigger for m

5-8" off your waist - that is amazing!! (Especially the part where it comes right back on again!)

I did have to get a newer ring re-sized, my fingers are so much smaller. even my wedding ring, which is 23 years old is a bit too large. I haven't lost that much weight. Well, I did at first, but I've gradually gained most of it back, but not in my fingers. That must have just been swelling - yuck!

So DH's casein test was negative? Mine was too, but I seem to be better off with out it. And now y'all's diets are less compatible. I am beginning to wonder about that over here. Casein is really tricky and hides places. Personally, I feel it is worth a rant or two, but I see your point about the wine...

Anyway, I am sure you are busy with with your class work/trying new gluten-free/CF recipes, but would to hear what your neuro says/how you're doing, with the Topa in a few weeks/whenever you have time. I am so happy for you; I spent nearly 10 years figuring all this out and you are well on your way to some answers. The internet speeds things up tremendously.

[mindwiped]

OK, well I did the neuro's yesterday, and the doc confirmed what I was thinking. I'm not a good candidate for Topamax-- I didn't want to just put a bunch of stuff out before talking to her, but I was having severe panic attacks, and really bad brain fog, along with a bunch of other stuff. Last Friday I was supposed to increase my dose, and just thinking about doing that set me into a panic attack, so I decreased my dose instead. I am doing a quick taper off and I've started Neurotin and Klonipin. The Klonipin is because I had an attack in her office, and she knew I'd need something to work the Topamax out of my system and the Neurotin is to help with the quick taper down, and then I'm supposed to take it with my rescue meds, to increase their effectiveness. I've also got a list of supplements and I've been prescribed to go to the gym every morning, to help with the anxiety and hopefully decrease the attacks. She's thrilled that I went dairy free and it helped as much as it did, which is why I think we're working on pulling me off of preventatives, other than my verapamil. I really like this doctor and her office staff, if there's anyone in the KC metro who needs a neurologist, please send me a message, I'll gladly tell you who I'm seeing.

The dairy free is still going well, but I boo-booed today. I grabbed a new 'vegan' cheese and after shredding it onto my pizza I see that it has a trivial amount of milk. Blast! I was hopeful as this was a nut cheese, and I'm trying to watch the soy intake. Maybe the Purely Decadent people will make a coconut milk cheese, as I love the coconut milk ice cream, and I've seen the yogurt, but I've never been a yogurt person.

Fragrances are funny, I work in a store where we sell handmade bath, hair and skin care products that are highly fragranced. Not a trigger, because other than synthetic musk (they use no animal-harmful ingredients) it's all essential oils. Walk me past the perfume counter in a mall and I'm holding my breath, trying to avoid triggering an attack. Sunflowers, the perfume from the '80s would do it every time, and walking past an Ambercrombie and Finch is almost a guaranteed migraine. I've learned, actual essential oils, I'm fine and I love scented products--Synthetic perfumes, no way!

I'm glad to hear what you think about the sub lingual allergy drops. I did it the old fashioned way with the injections. It helps, but, I think that the sinus surgery helped just as much, and going off dairy has amazed me with how well I'm handling things going into bloom. Not to go too far into TMI, but I'm actually draining, not just sitting there all stuffy, and I'm not using decongestants to start the drainage.

Rolling Along- thank you for all the advice and help. I'm sure I'll be back on here asking for more, but I wanted to be sure to let you know that all you've shared is VERY helpful, and has made thing much easier for me and my DH as we work on getting everything changed over to gluten-free/df

[RiceGuy]

Mindwiped: So glad you're doing better with the migraines! I know how rough it can be, and I also know how others who don't get headaches don't seem to understand just how horrid and painful it is. Given the remaining symptoms you've mentioned, I wonder if perhaps a gluten-free diet would now produce positive results. I mean, if you tried gluten-free but where still eating dairy, it may have masked any benefits. Just a thought.

As for the awful quality of coconut oils on the market, I've tried several brands, and they're basically all junk. That is, with the exception of Open Original Shared Link. It's the ONLY one I tried that actually smells and tastes like fresh coconut. It is amazing on everything, and should make for the most incredible coconut ice cream. They also have a few other products which look like they'd be perfect for coconut ice cream making, such as coconut milk powder. They offer a sample size of the oil, so you'll know what you're getting when you buy a jar.

[AliB]

Can I just butt in here?

So your DH is Celiac and you appear to be Dairy intolerant - but what if you are both still having stuff that triggers the migraines?

Why not go back to basics food-wise and follow something like the Paleo Diet or Failsafe, or the one that many of us are getting better on - the SCD and see whether you might just be able to dump the drugs altogether?

Any drug is adding to the toxic burden on the body and the liver. Drugs are 'foreign' substances that the body has to try and deal with and the less you need to take of them the better. The very fact that you are getting the migraines suggests that your liver is already in overload mode.

Much of the food out there is absolute rubbish. These diets avoid anything processed or 'mucked about with' and focus on good wholesome natural foods that are full of vitality rather than 'empty' calories.

Apart from raw 'cleansing' foods, anything else has had all the vital enzymes and many of the nutrients 'beaten' out of it through heating and processing processes. Pasteurisation of milk destroys the enzymes that would normally be in it to help us digest it properly and that one factor alone has caused a huge amount of damage over the last 100 years or so since it was introduced.

It is no wonder we are all so sick. Try reading Michael Pollan's 'In defense of food' - it's a real eye-opener. Most commercially produced food is made for one reason only - the 'filthy lucre' and whether it is any good for us or not is immaterial.

Whilst gluten-free does not contain gluten, much of it is still very processed and, in my experience, absolutely loaded with sugar and very carb-dense. As many of us cannot process carbs very well, it can actually, in some cases, make some things worse. Sugar robs the body of vital nutrients so the less we eat of that the better - it is an 'empty' calorie food which supplies us with nothing but robs us of much.

We could take all the nutritional supplements under the sun but without enzymes it is like having all the materials to build a house but no builders. Elderly people have a fraction of the enzyme 'bank' that young people have so the more we can get through our food, the better.

[mindwiped]

Ali B- Thank you for your thoughts, we do try to eat as natural of a diet as possible, and with as much nutrition as possible. I cook as many of our meals from scratch as time permits, and keep a few 'cheater items' around for meals on the run. Last night's dinner for me was a large portion (probably 3 portions-it tasted so good) of sesame stir fried Kale and a small portion of steak, followed with a half serving of homemade zucchini bread 3 hours later that I needed to help get the evening pills past the point where they got stuck.

I would love to be off all the medications, but for this particular moment, stopping them cold turkey would be BAD. The Topamax is an anti-seizure med and has been approved for use as a migraine preventative, which is why, after 26+ days of migraines in January, I was willing to try it. Once you taper up to your holding dose, you must taper off. If you stop this medication cold turkey, it can cause seizures, which no one wants. This is why I'm currently on the Neurotiun and the Klonipin. Both are to help me taper quickly, without seizures or other unwanted side effects. After I get off the Topamax and have it out of my system, I am to begin to taper the Neurotin and Klonipin, until I'm only using the Neurotin if I actually have a migraine, so hopefully with the dairy free diet, I will shortly be using it less and less.

"The very fact that you are getting the migraines suggests that your liver is already in overload mode." When I began getting these migraines I was on 2 daily medications, a diuretic for vascular migraines and a thyroid replacement pill, while I was concerned about rebound/MOH migraines the thought that Synthroid or verapamil would be giving me these headaches didn't cross my mind. I'm on the verapamil to prevent episodes, in fact.

While I understand you feeling about medications and will respect your point of view, right now, the hope is that dietary changes and some medications will take away my pain. Please realize that SCD/Paleo/etc will not be the fix for everyone, and I have looked at those as possibilities. But thank you for voicing your thoughts.

[AliB]

So sorry, I meant no inference that you should stop the drugs dead, just the hope that removing the common trigger foods and substances might just enable you to be able to taper down and be free of them at some point in the future.

It does take time for the body to adjust to a change in the diet and lots of different things go on as the body starts to detoxify and heal - as I can testify!

One of the weirdest things I and others have found is that you seem to go through a 'working backwards' of your health issues. I am going through an 'itchy back' session at the moment and I haven't had that for some years. I suspect it could be to do with my liver or pancreas trying to sort itself out.

Gradually I have been able to reduce and stop certain medications - I have been able to throw the blood pressure tablets away and my BP is now normal. I have been able to reduce my insulin (I am diabetic) and my energy is slowly coming back (I have been fatigued/borderline CFS most of my life.

Although it goes up and down somewhat as my body is going through various changes generally I tend to sleep better too.

I respect that you would prefer not to embark on anything of this nature at the moment, but I thought I would mention it in case you had not considered it at all. I hope you find more relief from your migraines - fortunately that and headaches is not one of my former and/or remaining symptoms but I know how debilitating they can be.

Regards, Ali.

[RollingAlong]

Hi mindwiped,

panic attacks - ugh! I found that whenever I changed my Topa dose, my thyroid meds needed adjusting. My main symptom was anxiety, but no panic, thank goodness. Later I found this in the medical literature; all the epileptic type meds can affect the thyroid. Anyway, when you get down from the Topa, you might want to check your thyroid again.

Essential oils - hmmm, have to look into that...

As for Riceguy's comments, the gluten-free/CF combo has gradually become more potent for me and I was wondering if it would for you too. The gluten affected the chronic daily headache and generally turned down the volume on my migraines. The dairy affected the sinus aspect of my headaches and just general quality of life.

As for Ali's comments, FWIW, I was eating very clean in terms of MSG, additives, etc and now I am eating Paleo.

I think it has helped, and I am getting geared up to try the Failsafe diet because I need to see just where my histamine tolerance ends and to know once and for all if salicylates are an issue.

I think my chances of controlling this with diet are better because my migraine are not classic. They were long/slow (72 hours), rather than sharp and shorter. I did not have an aura. This is just my opinion, based on reading the migraine boards, but the folks with classic M's with aura's, I think, are more likely to need some help from meds. Again, this is just my impression from reading multiple migraine boards.

My long term plan is to ditch the Topamax entirely. I sometimes think this is going to be rather simple and other times I feel like this med is actually doing rather a lot for me and I should keep it. I've decided not to be in a hurry at this point. Ali's "healing backwards" comment is very interesting because it sometimes seems that rather strange things are happening in our household as we've adopted these diet changes!

This board is very helpful for this discussion. There's some discussion of gluten and other food intolerances on the migraine boards; but not nearly enough.

Good luck getting through this next bit with the panic and getting down off the Topa. Going to the gym is an excellent idea! I remember doing that a lot too, come to think of it, and it really did help.

Off to look for some coconut oil supreme....

[mindwiped]

AliB- Not a big deal, I just know that there are those out there who assume all prescriptions are evil, and tell all those to stop them immediately, and with this particular combo, that wouldn't be good. After DH was diagnosed as celiac, I did have the panels ran, and this was as a full blooded carb queen, so I know that the tests would have been positive if I were celiac. They also did an upper GI scope about 2 years after DH's diagnosis (on me) and there were no signs of any villus blunting.

For all- I will watch for signs that my occasional gluten (toast in my own toaster/cup o soup) may be leading to celiac type issues, I am certainly familiar with the symptoms

Rolling Along- we had the thyroid dose settled prior to going on the Topamax, but the nuero's running labs to check all that, I think just because of how strangely I reacted to the meds. On the essential oils, if you have any pollen allergies, avoid any oils in the families of anything you're allergic to. Last night was the last dose of Topamax, and I'm doing well today, the gym really is helping, I'm just struggling to get myself up in the morning and get there.

[RollingAlong]

I think mine is pretty good, but your neuro is wow-za!

[RollingAlong]

x

[pele]

Hi Mindwiped,

Can I butt in here, too, and come to Ali's defense? I have read through this thread, and, with all due respect, the dairy substitutes you mention are not natural foods. They are highly processed concotions that look like food, but aren't. This is probably what led Ali to believe you are not eating a good diet.

If you are eating those things, then I wholeheartly endorse Ali's suggestion that you read Michael Pollan's book "In Defense of Food". You might also like his book "The Omnivore's Dilemma".

Hope you find a way to get rid of the headaches forever.

[mindwiped]

pele- you're right, some of these dairy substitutes aren't the healthiest foods out there, but there are a few dishes that I am just not quite willing to give up yet that do require a dairy substitute, which is why I was asking for help at the start of this thread. I did try many of the items, and for the first week or two, my processed food intake was probably quite a bit higher than I was used to it being, since I was looking for and trying substitutes. I am trying to avoid the soy based substitutes, as the more I read about soy, the less I want it in my diet, however the only truly milk free cheese I have found in my area is a soy based substitute, so I try to keep my cheese consumption down. I have tried rice milk, mostly to bake with, as I have never been a 'drinks milk by the glass' person. I will confess to having a sweet tooth, and really enjoy the 'So Delicious' coconut milk ice cream, but I did not think that the coconut milk itself was highly processed. I will admit that by the time it's ice cream, it's been processed, as would any ice cream, whichever milk base you were using.

I do know how easy it is to read a thread, and be certain you know what the issue is, and I am not trying to fuel any flames here, merely agree that I did have a few weeks with a lot of dairy substitute 'junk food.' I do think it's easy to have a very un-nutritious sounding diet when all you're asking about are substitutes for foods that can so easily be junk food. After the revisit to the neuro and the diet modifications she has placed me on, I am eating very nutritiously, and am cautious about making any major modifications without passing them by her, as she was very adamant about me being on her diet. Therefore, if I sounded defensive to anyone, I wasn't trying to, and I hope you'll forgive me.

Thank you all, I know you're all trying to help get me/keep me healthy!