Eczema · Gluten-free

Day 10 – Ending Eczema

We have been actively working to get rid of the eczema for a full 10 days! To my knowledge, Lily has only had one slip-up with eating gluten….when she popped an animal cracker in her mouth, while filling a little baggie for her brother.

The eczema patches have gotten worse then better then worse. I don’t know if we are on the right path or not, but I know 10 days isn’t enough time to make a decision. So we’ll press on, gluten-free. 🙂 I am borrowing a couple of cookbooks from a friend, and my mom found a gluten-free baking recipe book, so we have plenty of ideas!

Her legs have been extremely itchy in the middle of the night, and she still wakes up to scratch and then confess to me about scratching them. 😦 Poor girl just needs a good night’s sleep!

We are coating them with shea butter at least twice a day (more if she is wearing jeans all day…she itches without realizing THROUGH the jeans, which always makes the skin crack or super irritated). Today we started rubbing the fresh aloe, from our plant, on the areas. Tonight, I will start applying the Vitamin E oil again.

I have updated pictures, but they aren’t very encouraging. They are saved in my phone for now, but when I have more time I will post them. It is a little discouraging to see them worse, BUT everything online says it will get worse before it gets better. Just hard to see that reality right now. I caved and applied the plain hydrocortisone cream (over-the-counter) when she is on the verge of tears. Hoping to move away from that in the future.

The steroid withdrawal has become more confirmed to me. A ton of medical sites (like, the ones posted by hospitals or doctors or medical schools) discredit the “steroid withdrawal” claim. They say the side effects from potent steroid creams (like what Lily was using) are only if applied incorrectly. The directions from our doctor were to apply twice a day when the area is inflamed. But, the creams aren’t supposed to be used long-term.

So, riddle me this: if we use the cream twice a day, then we stop when it seems to be getting better. THEN it gets ridiculously crazy worse and we go back on the cream and do it over again… do we NOT use it long-term? And how do they explain the getting worse when we stop the steroid?? There is only one more potency level above the cream we were using…..I can only imagine how bad the withdrawal would be if she were coming off one of those.

I don’t understand the logic behind all the creams OR the ignoring of steroid withdrawal. The insanely huge number of people claiming it online can’t ALL be wrong…can they?! And I am adding Lily’s name to the list. Because NOT using the steroid cream is like seriously sending her body into a crazy withdrawal. And the eczema is much worse.

Yes, we are flushing out her system with diet changes. BUT, her skin is craving the steroid. And it looks angry. Sounds silly, but it does. And she is embarrassed. She doesn’t like to talk about it. It doesn’t matter how many times I tell her don’t worry about it or try not to scratch or whatever….she is worried about infection or people seeing it or having to talk about it or scratching in her sleep.

I am thankful for doctors and the knowledge the medical community has to help us with our health. But, I do feel like they have failed my daughter with treating her skin. Diet changes haven’t been discussed. Psychological effects of the eczema aren’t discussed. Hormonal changes from the eczema withdrawal aren’t discussed (and let me tell you, angry outbursts immediately followed by sobbing are NOT normal).

So, I am praying for a happier post in the next week. 🙂 And maybe I’ll post the pictures to show the changes.

Tonight is chicken piccata (a change from the chicken chili I had planned) with mashed potatoes. Gotta go mash my taters!


4 thoughts on “Day 10 – Ending Eczema

  1. “So, riddle me this: if we use the cream twice a day, then we stop when it seems to be getting better. THEN it gets ridiculously crazy worse and we go back on the cream and do it over again… do we NOT use it long-term? And how do they explain the getting worse when we stop the steroid??”

    The “getting worse when we stop the steroid” part is not the result of using the steroid, it’s the result of abruptly stopping the steroid. One issue I have with many physicians is that they don’t recognise the need to taper off the use of topical steroids, despite that most do seem to recognise this with systemic steroids.

    What is happening is a rebound effect caused by an abrupt disappearance of of supplemental cortisol in the skin ad blood. Some of the topical steroid does make it into the blood stream, but most does not. As well, the body cannot differentiate between the steroid from medicines and the cortisol it produces naturally. So, the cortisol regulating system (called the “HPA Axis”). While the HPA axis picks up on the drop in free cortisol and “cortisol-looking” molecules in the blood, and tries to re-regulate its production accordingly, it has no idea that the extra “cortisol-looking” molecules are now missing from the skin.

    Now, something to be aware of, is that while cortisol is labelled the “stress hormone”, its role is actually to control stress (i.e., reduce inflammation and to regulate elevated immune response). It doesn’t cause stress or inflammation. Many other immune mediators are responsible for causing the inflammation, and a rapid reduction in cortisol/steroid allows these other mediating factors to flourish.

    Slowly reducing the amount and potency of steroid applied to ezcema is far more productive, and leads to less rebound. however, the caveat is that unless the actual cause of the eczema is controlled, rebound will occur, regardless.

    Corticosteroids are used to controll the symptom of eczematous inflammation. They are not a “fix”, nor a “cure”. The intent is to bring the inflammation down to a level that improves “quality of life”. This also provides a means to reduce inflammation when attempting to correct the actual cause of the eczema. the ultimate goal, then, is to bring the inflammation under control, remove the cause/trigger for the eczema, and hopefully be left with improved skin when the steroid is tapered off.

    “There is only one more potency level above the cream we were using…..I can only imagine how bad the withdrawal would be if she were coming off one of those.”

    What is the prescription, if I may ask? I would have a personal issue with a physician giving a child a class 2 steroid unless absolutely necessary. Was this a step up from earlier meds that were not effective?

    On the issue of “withdrawal”, the worsening of the eczema is due entirely to the actual cause of the eczema having not been addressed.

    You are correct that there is a huge failure in the medical industry to pursue dietary, hormonal, chemical, and psychological contributors to the severity of eczema. This is beginning to change, but the medical industry appears to move slowly.

    When investigating dietary concerns, I have found it more useful to take an aggressive approach to isolating food triggers; remove everything for base period, and then slowly test individual food items (not “recipes” or commercial food products), one at a time, returning to the total elimination stage between each test to allow the body time to remove all molecules of the previous test food. Take brutally comprehensive notes at every step.

    Keep in mind that foods may not be the only trigger. Environmental triggers (down to the air we breathe) can be a strong contributor, as well bacterial colonisation on the skin that would normally not be an issue for someone with a healthy immune system. So you may have to attack this from several angles at once.

    Also, keep in mind that eczema is not “curable”. It is a primary genetic immunologic disease that will exist for an eczema sufferer as long our DNA does not change. Also there is presently no biologic treatment readily available–a few are in phase 2/phase3 clinical trials, but they will undoubtedly be very expensive when finally FDA approved in ten years or so. until that time, we are stuck with working to remove the triggers, rather than expect our bodies to figure out how to cope with them.

    1. Thanks for your thoughts! I appreciate the feedback and suggestions, for sure. Her prescription is Triamcinolone Acetonide. After reading your comment and struggling with her itching and feeling like we’ll never figure this out…we went back to applying the steroid cream at night. It has reduced the visible irritation. And my daughter had pizza over the weekend without any issues from the gluten (after not having any for over 2 weeks), so I don’t think the gluten is an issue (as I had kind of hoped, since that seemed to be the “easiest” of all the triggers to avoid). I don’t think it is a lactose issue either, but I don’t really know for sure. That would be a tough one for us to eliminate. It is just so strange how it showed up in the Spring full force and hasn’t quieted down at all. She does have sleep problems (since april 2014), so I am sure the stress from waking and not being able to sleep again adds to the flare ups now. 😦 So, I am not sure where to go from here. We eat pretty basic foods – raw, real foods mostly with some from-scratch baked goods. Little to no packaged, processed or pre-made stuff. Going to work on her stress levels, hopefully, to see if helping her sleep better helps the eczema quiet down more. Thanks, again, though for commenting. I appreciate it!

      1. Depending on the potency, triamcinolone acetonide can be class 3 (0.1% ointment) down to class 6 (0.025% cream). Cream vs. ointment plays a role in potency classification. Creams are weaker as they permit evaporation of the medicine before absorption. Ointments are stronger because they trap the medicine beneath an occlusive layer, allow for more complete absorption.

        These are the basic classifications for triamcinolone acetonide: class 6, 0.025% cream; class 5, 0.025% ointment; class 4, 0.1% cream; and, class 3, 0.1% ointment. But, there are several, far stronger corticosteroids out there. So, you don’t have to be as worried as you appeared in your post.

        Also, you can reduce the potency of the med by compounding it with pure petroleum jelly before hand. Just be sure to use consistent amounts every time, and pay attention to progress.

        Unfortunately, natural diets can be just as problematic for food-triggered eczema as processed ones. Also try to rule out soy, chicken, eggs (yes, separately from chicken), corn, tree nuts, peanuts, and if you can manage it, dairy. You might also consider seeing an allergist for either a skin prick or blood IgE series (or, both) to help identify possible triggers. Allergy tests are not completely reliable, but they can be very helpful in pointing you in the right direction.

        Since you mention that her flares began in Spring, there could also be pollen and mould triggers as contributors. Again, an allergist may be able to help with these identifications.

        Yes, lack of sleep will contribute to flares. The body releases the majority of its cortisol only one or two hours before waking, considering a normal sleep cycle. When sleep is disrupted cortisol production is disrupted, and that has a negative impact on the reduction of inflammation.

        Keep in mind that triggers, especially foods, can not only cause inflammation to occur after several days without an apparent reaction, but that the inflammation can be sustained by free histamines produced by a variety of immune mediators. Cell-mediated allergic reactions take the longest to clear following the removal of the trigger.

        It’s an awful process. I’ve been on a severe elimination diet for more than a year, now. I test occasionally, and cheat a bit, too. But, I frequently

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