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(caljosmom) #1

Hi! I am the mom of a 4 year old who was diagnosed almost 2 years ago, she was then earlier this year dx'd with celiacs disease and now inthe last couple weeks she was dx'd with thyroid issues! I am so overwhelmed...we never had trouble with her numbers or her diabetes until the celiacs reared its beautiful head! Anyone else dealing with both? I don't know what to do to make this better for her! Very tired mom ;-)


(Kateski) #2

It sounds like she has a very sensitive system and a very active autoimmune response.  My suggestion is that you seek out as many natural and alternative physicians and solutions as possible.  Honestly with someone that is that sensitive often Western medicine is very harsh, like trying to kill an ant with an anvil, it is overkill.   Obviously when you are T1 Insulin is necessary, but it sounds like she has a host of other issues that they are going to try to give her pills for...  Also for her sake you need to breathe and relax, stress and anxiety is very contagious, especially with mothers and daughters and it only contributes more to the autoimmune response.  I have a lot of experience with this phenomenon with my own mother.  This may not be the answer you are looking for and it might not be your big solution, but if you could find a mother/daughter yoga class or even dvd, I think it might go a long way towards calming both of you and even making her immune system less overactive.  It will be a constant struggle and it is not ever going to be easy, these are life changing health concerns we are talking about.  Trying to make things like exercise, meditation and gluten-free cooking fun things to do together hopefully will alleviate the burden a bit and make it better for both of you.  Best of luck.

 


(marige) #3

I don't agree with the other response stating stress and anxiety with you and your daughter.  Sounds like she has other issues she is dealing with.  Celiac is a very common issue with T1 patients.  When my grandson was diagnosed--age 5--he was also checked for celiac which he does not hav.  I have friends who have grandchildren with T1 and celiac.  Not to worry.  Just follow the diaticians advice.  Not easy I am sure.  Positive attitudes go such a long way.  It can be handled.  Also, thyroid disease is a very easy one to handle--treated with pills and monitored on a regular basis. These are all auto immune diseases.  Just keep positive and try to roll with th punche.  you do not want to create an anziety driven little girl.  Take one day at a time.


(Kateski) #4

Margie, it does seem like you do agree with me.[quote user="Margie"]Just keep positive and try to roll with th punche.  you do not want to create an anziety driven little girl.  Take one day at a time.[/quote]


(caljosmom) #5

Yes I am overwhelmed and tired, I get no sleep... but we take things second by second! I thank you for your opinions and thoughts, I am mostly wondering if their are any other parents out there dealing with the T1 and celiacs because I am wondering if the combination makes it harder to control glucose! I have a very happy kid who has alot of autoimmune issues, that make her very sick~ she has gone into DKA twice since having celiacs and her numbers are high and we can't ever seem to get them to come down, if by chance they do, she crashes down to the 40's. She is a handlful, but the most precious handful anyone could have! I want the very best for her and am just wondering how other parents who deal with both are coping. I honestly don't know if I agree with the alternative medicine path at this time but I am thinking I may look into it. I have never heard of a "sensitive autoimmune system" it either works or it doesn't in my opinion. My little girls is fighting her very hard and is opting not to work. I am very concerned about her future as I think any parent would be, I don't think that makes me anxious or my daughter have anxiety issues.


(Kateski) #6

I think what I was saying is being misunderstood.   I don't think that you or your daughter have "anxiety issues".  You said that you are "overwhelmed", that is perfectly normal considering all that you are going through right now.  I have definitely been there, not with my child's illness, but my own.  I don't have children, I can only imagine how difficult that is...  Also, we do not have an "autoimmune system"  but an immune system.  And yes some peoples immune systems are more finicky than others.  Do what you want and what you think you need to do.  The advice that I have offered only comes from experience.  One of my other autoimmune issues is Menieres Disease.  One doctor put me on a bunch of pills and made me WAY worse.  Then I saw 2 doctors who are trained in traditional Western Medicine but who use Integrative therapies and do not rely on writing prescriptions to "fix" people.  They use a holistic approach. For my sensitive system, one that is highly sensitive to both food ingredients and medication, this has kept ME very healthy.  In the long run, stress management mostly in the form of exercise has also been VERY helpful.   In conclusion, I am sorry that I replied to this post, as I am not a parent with a child that has both T1 and Celiac.  I have several friends who are Celiac and I personally have a dysfunctional immune system.  The suggestions that I make are based on the conversations that I have had with Celiac friends and the experiences I have had taking care of my own delicate immune system.  I am in no way suggesting that you go find some quack of an alternative practitioner.  I am just hoping that you and your doctors will be open to the possibility of therapies that exist outside of a pill bottle.


(caljosmom) #7

I am very grateful to hear you opinion, thats why I am here. It sucks to watch your baby go through these things and not know what to do about it. We all have our experiences which is why this juvenation is so great, we can post our thoughts and hopefully help someone else a bit.  I am open to trying different things but I am a nurse so my initial response is do what the docs say, then I think about it and get a total inderstanding of the whole situation and all the options and hope I am doing right for my kid. I loved your yoga class idea, that would be fabulous and I have already started investigating that as an outlet for her and me. I never thought about yoga and I wouldn't have probably without your idea! Although I am looking for parents of kids with T1 I am always open to meeting people who are battling this awful disease. I am curious what Menieres Disease is? Again thanks for your input, I didn't mean to sound before like I didn't want you to reply, for that I am sorry. I would love to get some info in immune boosting alternatives if you have any and wouldn't mind sharing!  :)


(Kateski) #8

No worries, it is hard sometimes to communicate without hearing inflection and seeing facial expression and gestures...  Menieres disease is an autoimmune disease that deals with the regulation of fluid in the inner ear and can cause violent and incapacitating vertigo (I had a bout once where I was vomiting so hard that I got a black eye from bursting blood vessels).  Intense stuff.  My husband and I have had to do a ton of research to find out what helps me... It is known to be a "self perpetuating" disease because anxiety can exacerbate it (most chronic illnesses are this way); so you are really stressed out and you have an attack and then you get even more stressed out because you are sick...  I am not all new agey or anything, but when you are very desperate and very sick you tend to explore all avenues and find out what combination of things works.  For me it is a combination of meds that I take if and only if I feel a flare up coming on which usually only happens the week before my period (hormone changes, added stress and fluid retention) and it is not every time, maybe 3 or 4 times a year now.   As preventative medicine...nutrition (eliminating prepackaged and processed foods is very significant), exercise and stress management have been huge for me too.  You and your daughter are very strong and brave...  Definitely let her know that she is one tough cookie!