Another Newbie

[Susan-in-NC]

Hello! I am another recently Dx Celiac. I have been astounded and amazed at the number of things I have "wrong" that now all appear to be related to Celiac.

For most of my childhood my folks complained about my low energy level, groggy phases and that I never "grew up" ( siblings male and female are all above average in height -- I claim 5' 1"). As an adult I was told by more than 1 Dr. that I didn't absorb vitiamins properly, but they never looked further into the situation for cause. I've taken extra B, C and iron my whole life and have had constant anemia; not to mention the bouts of depression (I had always blamed not quite fitting in -- even with my own family). I also had a lot of acid, bouts of the runs or being blocked badly. My other aches and pains I attributed to being such a tomboy, and the tumbles I took for the aches in my knees, back and bones in general.

So, how did things change? After avoiding the Dr for a few years (didn't like him, he was non-responsive to my complaints), I went in with high BP and very low iron -- the red cross lady was alarmed it was so low. I had beefed up my iron and went to donate. (High demand blood type). She refused me, said I needed to get to my Dr ASAP! So, I was shook, and scheduled the appt. Went in with a list of problems, persistant cough from last Dec. low energy, slighly elevated BP, shallow breathing (just cant get a deep breath), muscle cramping, bone aches and constant headaches. He asked what changed! I said nothing really, I've just wrote them all down so you would listen to me.

My iron was at 5, had a heart mummer (said due to low iron) was sent for immediate chest X-ray because I sounded like someone who had smoked for years (never smoked) and an appt was set for the lovely interal viewing. Lucked out there, the internist makes a habit of taking a biopsy for all endoscopic proceedures. The chest x-ray was clear, heart mummer is still there and the biopsy came back positive. By the way GP had started to mention CS but then said no you wouldn't have that, your not anaexic. Boy was he shocked! I had gotten the call from the specialist who said positive and set followup blood test before seeingGP again. In my private comedy of errors,he hadn't even gotten a notice that the biopsy had been done, I said call Dr, b/c I've been diagnosed with CS.

Since then GP has been great, but the follow up with the specialist has been very disapointing. Talked to me like I was a child, wouldn't explain my numbers, just said I was highly elevated and must be very sensitive. I tried to talk about what the general symptoms were and how I could tell if I was better. He said the follow up tests would show I've followed the diet. Nothing else to help, other than to contact support groups and knock out all gluten from my diet.

The GP gave me some general info, said he needed to research more himself -- which I can respect! I am also having a bone scan this Weds and some other follow up on the pulmanary problems; although he does think this may all be interelated.

So, I read labels. Have Whole Foods nearby. But, what additives are dirived from wheat or gluten linked? Why, if as someone on this forum posted that Celiac Sprue is covered under the ADA, do we have to purchase lists of "safe" products? I tried to contact the local support group but have not gotten much of a response from their leadership, they seem more focused on their children who also have this.

Oh, and one other thing I found out -- My son has and IgA Kidney problem -- likely linked to CS also. Am in the process of getting him set to be tested.

Well, that is my story -- DH is trying to understand -- doesn't get cross contamination. I am a bit frustrated with him. He had gastric bypass about a year ago. I read up on it and did everything, support groups, online and in person, met with his Dr. modified cooking and family life to make things easier for him. Not getting much back -- finally did get him to NOT put his bagel in the freshly cleaned out toaster oven with my gluten free bread. Small victory, but it is a step.

Any advise or help would be gratefully accepted.

Susan

[LynnO]

  Susan_in_NC said:

Hello! I am another recently Dx Celiac. I have been astounded and amazed at the number of things I have "wrong" that now all appear to be related to Celiac.

For most of my childhood my folks complained about my low energy level, groggy phases and that I never "grew up" ( siblings male and female are all above average in height -- I claim 5' 1"). As an adult I was told by more than 1 Dr. that I didn't absorb vitiamins properly, but they never looked further into the situation for cause. I've taken extra B, C and iron my whole life and have had constant anemia; not to mention the bouts of depression (I had always blamed not quite fitting in -- even with my own family). I also had a lot of acid, bouts of the runs or being blocked badly. My other aches and pains I attributed to being such a tomboy, and the tumbles I took for the aches in my knees, back and bones in general.

So, how did things change? After avoiding the Dr for a few years (didn't like him, he was non-responsive to my complaints), I went in with high BP and very low iron -- the red cross lady was alarmed it was so low. I had beefed up my iron and went to donate. (High demand blood type). She refused me, said I needed to get to my Dr ASAP! So, I was shook, and scheduled the appt. Went in with a list of problems, persistant cough from last Dec. low energy, slighly elevated BP, shallow breathing (just cant get a deep breath), muscle cramping, bone aches and constant headaches. He asked what changed! I said nothing really, I've just wrote them all down so you would listen to me.

My iron was at 5, had a heart mummer (said due to low iron) was sent for immediate chest X-ray because I sounded like someone who had smoked for years (never smoked) and an appt was set for the lovely interal viewing. Lucked out there, the internist makes a habit of taking a biopsy for all endoscopic proceedures. The chest x-ray was clear, heart mummer is still there and the biopsy came back positive. By the way GP had started to mention CS but then said no you wouldn't have that, your not anaexic. Boy was he shocked! I had gotten the call from the specialist who said positive and set followup blood test before seeingGP again. In my private comedy of errors,he hadn't even gotten a notice that the biopsy had been done, I said call Dr, b/c I've been diagnosed with CS.

Since then GP has been great, but the follow up with the specialist has been very disapointing. Talked to me like I was a child, wouldn't explain my numbers, just said I was highly elevated and must be very sensitive. I tried to talk about what the general symptoms were and how I could tell if I was better. He said the follow up tests would show I've followed the diet. Nothing else to help, other than to contact support groups and knock out all gluten from my diet.

The GP gave me some general info, said he needed to research more himself -- which I can respect! I am also having a bone scan this Weds and some other follow up on the pulmanary problems; although he does think this may all be interelated.

So, I read labels. Have Whole Foods nearby. But, what additives are dirived from wheat or gluten linked? Why, if as someone on this forum posted that Celiac Sprue is covered under the ADA, do we have to purchase lists of "safe" products? I tried to contact the local support group but have not gotten much of a response from their leadership, they seem more focused on their children who also have this.

Oh, and one other thing I found out -- My son has and IgA Kidney problem -- likely linked to CS also. Am in the process of getting him set to be tested.

Well, that is my story -- DH is trying to understand -- doesn't get cross contamination. I am a bit frustrated with him. He had gastric bypass about a year ago. I read up on it and did everything, support groups, online and in person, met with his Dr. modified cooking and family life to make things easier for him. Not getting much back -- finally did get him to NOT put his bagel in the freshly cleaned out toaster oven with my gluten free bread. Small victory, but it is a step.

Any advise or help would be gratefully accepted.

Susan

[Eriella]

HEllo,

Welcome to the board! As far as food additives, most brands have an allergen statement which will say CONTAINS WHEAT (or others) or NO ALLERGENS. If it has an allergen statement, but wheat is not listed, then all you have to do is look for barley, malt, and rye in the ingredient list. If there is no allergen statement, you should look for wheat, as well as carmel food coloring (sometimes is glutenous) and modified food starch (normally corn, but can be from wheat). When in doubt, google the name of the product and "gluten". Someone probably has already figured it out.

As far as convincing your husband, don't give him a choice . Tell him gluten will slowly and painfully kill you, so he needs to cooperate and go out of his way to prevent you from being sick. This means that if he is allowed to eat gluten in the house, there must be separate containers for condiments, toasters, cutting boards, and spoons. If you see him using yours, give him a guilt trip like you wouldn't believe, asking him why is he trying to hurt you and make you sick? (if you need help with the guilt, ask any catholic with a large family-- they are pros )Give him some time and it will get better. The first time he sees that you got really sick from cross contamination (especially when he is the cause), he should definitely change. But hopefully it won't get to that point.

[LynnO]

Hi Susan, I am also another recent Celiac. And i have to agree with your comment about the number of things wrong that appear to be related to Celiac. I have known something was up for a long time but it took my brother getting diagnoised for my doctor to agree to test me. Now myself as well as one of my Aunts also has Celiac. I have had "weird" things such as it taking me 8 years to get pregnant with my second child, knee pain, the normal gas and bloating and just not feeling right. The kicker was getting shingles right before Christmas this year, the PA said gee you have had your gall bladder out just recently, and now shingles and you are fairly young and healthy something is up. So i was happy to find out and now i am eager to find out more from other people and consider my self very lucky because my symptoms are so as bad as they could be. But i avoid glutent and the family is all embracing it fine. I have not had my boys tested, i guess i am scared to but i know i should now is the time because they are young. I wish you all the best in your journey. Hope to read more from you. Take care! Lynn

  Susan_in_NC said:

Hello! I am another recently Dx Celiac. I have been astounded and amazed at the number of things I have "wrong" that now all appear to be related to Celiac.

For most of my childhood my folks complained about my low energy level, groggy phases and that I never "grew up" ( siblings male and female are all above average in height -- I claim 5' 1"). As an adult I was told by more than 1 Dr. that I didn't absorb vitiamins properly, but they never looked further into the situation for cause. I've taken extra B, C and iron my whole life and have had constant anemia; not to mention the bouts of depression (I had always blamed not quite fitting in -- even with my own family). I also had a lot of acid, bouts of the runs or being blocked badly. My other aches and pains I attributed to being such a tomboy, and the tumbles I took for the aches in my knees, back and bones in general.

So, how did things change? After avoiding the Dr for a few years (didn't like him, he was non-responsive to my complaints), I went in with high BP and very low iron -- the red cross lady was alarmed it was so low. I had beefed up my iron and went to donate. (High demand blood type). She refused me, said I needed to get to my Dr ASAP! So, I was shook, and scheduled the appt. Went in with a list of problems, persistant cough from last Dec. low energy, slighly elevated BP, shallow breathing (just cant get a deep breath), muscle cramping, bone aches and constant headaches. He asked what changed! I said nothing really, I've just wrote them all down so you would listen to me.

My iron was at 5, had a heart mummer (said due to low iron) was sent for immediate chest X-ray because I sounded like someone who had smoked for years (never smoked) and an appt was set for the lovely interal viewing. Lucked out there, the internist makes a habit of taking a biopsy for all endoscopic proceedures. The chest x-ray was clear, heart mummer is still there and the biopsy came back positive. By the way GP had started to mention CS but then said no you wouldn't have that, your not anaexic. Boy was he shocked! I had gotten the call from the specialist who said positive and set followup blood test before seeingGP again. In my private comedy of errors,he hadn't even gotten a notice that the biopsy had been done, I said call Dr, b/c I've been diagnosed with CS.

Since then GP has been great, but the follow up with the specialist has been very disapointing. Talked to me like I was a child, wouldn't explain my numbers, just said I was highly elevated and must be very sensitive. I tried to talk about what the general symptoms were and how I could tell if I was better. He said the follow up tests would show I've followed the diet. Nothing else to help, other than to contact support groups and knock out all gluten from my diet.

The GP gave me some general info, said he needed to research more himself -- which I can respect! I am also having a bone scan this Weds and some other follow up on the pulmanary problems; although he does think this may all be interelated.

So, I read labels. Have Whole Foods nearby. But, what additives are dirived from wheat or gluten linked? Why, if as someone on this forum posted that Celiac Sprue is covered under the ADA, do we have to purchase lists of "safe" products? I tried to contact the local support group but have not gotten much of a response from their leadership, they seem more focused on their children who also have this.

Oh, and one other thing I found out -- My son has and IgA Kidney problem -- likely linked to CS also. Am in the process of getting him set to be tested.

Well, that is my story -- DH is trying to understand -- doesn't get cross contamination. I am a bit frustrated with him. He had gastric bypass about a year ago. I read up on it and did everything, support groups, online and in person, met with his Dr. modified cooking and family life to make things easier for him. Not getting much back -- finally did get him to NOT put his bagel in the freshly cleaned out toaster oven with my gluten free bread. Small victory, but it is a step.

Any advise or help would be gratefully accepted.

Susan

[Karen B.]

  Susan_in_NC said:

----snip-----

Since then GP has been great, but the follow up with the specialist has been very disapointing. Talked to me like I was a child, wouldn't explain my numbers, just said I was highly elevated and must be very sensitive. I tried to talk about what the general symptoms were and how I could tell if I was better. He said the follow up tests would show I've followed the diet. Nothing else to help, other than to contact support groups and knock out all gluten from my diet.

----snip----

So, I read labels. Have Whole Foods nearby. But, what additives are dirived from wheat or gluten linked? Why, if as someone on this forum posted that Celiac Sprue is covered under the ADA, do we have to purchase lists of "safe" products? I tried to contact the local support group but have not gotten much of a response from their leadership, they seem more focused on their children who also have this.

----snip----

Well, that is my story -- DH is trying to understand -- doesn't get cross contamination. I am a bit frustrated with him. He had gastric bypass about a year ago. I read up on it and did everything, support groups, online and in person, met with his Dr. modified cooking and family life to make things easier for him. Not getting much back -- finally did get him to NOT put his bagel in the freshly cleaned out toaster oven with my gluten free bread. Small victory, but it is a step.

Any advise or help would be gratefully accepted.

Susan

The referral to a local support group may be your doctor's admission that they would know more about the actual implementation of a gluten-free diet. My doc and gastro doc both said as much to me. I found The Gluten Free Bible by Jax Peters Lowell to be very helpful (although any product list of safe and unsafe products is out of date as soon as it's published). Others here have found Living Gluten-Free For Dummies by Danna Korn to be helpful for getting started.

The lists of "safe" products are sold as a convenience purchase. Some find them handy, others (myself included) prefer a DIY approach. The Celiac mantra is "Read labels, read labels, read labels" and even with product lists, changes can happen before the next list comes out. Shopping and meals get much easier with practice.

It will probably take your hubby a little time to get used to thinking about your diet. My hubby tried from day one but it took him awhile to figure out what issues created problems for me (and remember them). Ultimately, my hubby's decision was for our house to be totally gluten-free because that way, he doesn't have to worry about accidently making me sick. Others here are able to have a mixed home. You might want to ask your hubby to read this article and then post it in your kitchen.

How much gluten is in a normal diet, and how much does it take to cause damage in a celiac?

https://www.celiac.com/st_prod.html?p_prodi...-07107465614.77

I'd try the local chapter again, maybe go to a meeting. But if you still can't get a response, perhaps a group in the same state but nearby city might help?

List of Local Celiac Disease Support Groups/Chapters

https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0

If you mention here what area of the country you are in, perhaps someone here can help you with local resources.

[Meemsy]

I hear you about everything "wrong" with you that is Celiac related. There was a point where I was really begining to believe that all the little things wrong with me added up to my having one serious case of hypochondria...goodness knows that's what the doctor's were telling me.

I have been gluten free since May 30th of this year. The first couple of weeks were incredibly overwhelming, but I assure you once you get the hang of reading the labels and knowing what to look for, it becomes easier. I do not know how old your son is, or if you have any other children, but mine (11 and 14) have become experts in reading labels and helping out at the grocery store. I also gave them a label maker and let them have at it with labeling all of my gluten free condiments (which will help keep cross contamination at bay).

I do have a mixed house (gluten and gluten-free) but we keep everything seperate. Also, my husband and I agreed, not that I really gave him any choice, that anything used to cook for the family had to be gluten free. We got rid of everything in the pantry that was not safe and replaced it.

At this point I would have to say that the single biggest problem I am having is with keeping the rest of the family away from MY food! Especially the Pamela's chocolate chocolate chip cookies and Whole Foods roasted garlic and sun dried tomato bread.

Best wishes to you...meemsy

[sfm]

  Susan_in_NC said:

Hello! I am another recently Dx Celiac. I have been astounded and amazed at the number of things I have "wrong" that now all appear to be related to Celiac.

For most of my childhood my folks complained about my low energy level, groggy phases and that I never "grew up" ( siblings male and female are all above average in height -- I claim 5' 1"). As an adult I was told by more than 1 Dr. that I didn't absorb vitiamins properly, but they never looked further into the situation for cause. I've taken extra B, C and iron my whole life and have had constant anemia; not to mention the bouts of depression (I had always blamed not quite fitting in -- even with my own family). I also had a lot of acid, bouts of the runs or being blocked badly. My other aches and pains I attributed to being such a tomboy, and the tumbles I took for the aches in my knees, back and bones in general.

So, how did things change? After avoiding the Dr for a few years (didn't like him, he was non-responsive to my complaints), I went in with high BP and very low iron -- the red cross lady was alarmed it was so low. I had beefed up my iron and went to donate. (High demand blood type). She refused me, said I needed to get to my Dr ASAP! So, I was shook, and scheduled the appt. Went in with a list of problems, persistant cough from last Dec. low energy, slighly elevated BP, shallow breathing (just cant get a deep breath), muscle cramping, bone aches and constant headaches. He asked what changed! I said nothing really, I've just wrote them all down so you would listen to me.

My iron was at 5, had a heart mummer (said due to low iron) was sent for immediate chest X-ray because I sounded like someone who had smoked for years (never smoked) and an appt was set for the lovely interal viewing. Lucked out there, the internist makes a habit of taking a biopsy for all endoscopic proceedures. The chest x-ray was clear, heart mummer is still there and the biopsy came back positive. By the way GP had started to mention CS but then said no you wouldn't have that, your not anaexic. Boy was he shocked! I had gotten the call from the specialist who said positive and set followup blood test before seeingGP again. In my private comedy of errors,he hadn't even gotten a notice that the biopsy had been done, I said call Dr, b/c I've been diagnosed with CS.

Since then GP has been great, but the follow up with the specialist has been very disapointing. Talked to me like I was a child, wouldn't explain my numbers, just said I was highly elevated and must be very sensitive. I tried to talk about what the general symptoms were and how I could tell if I was better. He said the follow up tests would show I've followed the diet. Nothing else to help, other than to contact support groups and knock out all gluten from my diet.

The GP gave me some general info, said he needed to research more himself -- which I can respect! I am also having a bone scan this Weds and some other follow up on the pulmanary problems; although he does think this may all be interelated.

So, I read labels. Have Whole Foods nearby. But, what additives are dirived from wheat or gluten linked? Why, if as someone on this forum posted that Celiac Sprue is covered under the ADA, do we have to purchase lists of "safe" products? I tried to contact the local support group but have not gotten much of a response from their leadership, they seem more focused on their children who also have this.

Oh, and one other thing I found out -- My son has and IgA Kidney problem -- likely linked to CS also. Am in the process of getting him set to be tested.

Well, that is my story -- DH is trying to understand -- doesn't get cross contamination. I am a bit frustrated with him. He had gastric bypass about a year ago. I read up on it and did everything, support groups, online and in person, met with his Dr. modified cooking and family life to make things easier for him. Not getting much back -- finally did get him to NOT put his bagel in the freshly cleaned out toaster oven with my gluten free bread. Small victory, but it is a step.

Any advise or help would be gratefully accepted.

Susan

Susan-

I think that it's difficult enough for us to get our heads around how to stay safe, and even more difficult for our family. I am a single mom with two children, 11 and 8 (not gluten free). They are willing to try some of "my" food - my daughter loves the brown rice macaroni.

But it took awhile for them to understand cross contamination. What hit home was one time I served them pizza, then forgot to wash my hands right afterward, and grabbed something out of the refrigerator for myself. A half hour later my daughter walked in on me throwing up, and that was an eye opener for her.

Now they do what they can to try to keep me from touching their food, and my daughter is better than I am at remembering that we shouldn't share snacks or drink from the same cup or straw if she's been eating something with gluten in it.

It might take awhile for your husband to really understand, just like I think it takes us awhile to fully grasp it. But hang in there, it gets easier as you get more used to it.

Sheryll

[Guhlia]

I just wanted to add that just cleaning out your toaster isn't enough. Small crumbs will remain lodged in the toaster and it's impossible to get all the gluten out, plus, it sticks to the walls of the toaster. Ideally you should have a seperate toaster for gluten free items. If you don't want to do that or can't do that, I would recommend toasta bags. Even if you aren't getting sick from trace amounts of gluten, it doesn't mean it's not harming your body.

[Susan-in-NC]

Thank you all for your positive support and suggestions. My son is 17 almost 18 and is a great help, just a teen. My daughter is 23 and was supposed to be tested today (after the Dr "forgetting it" on previous visit). She doesn't live at home but is doing some reading and "processing" as is my son.

Had a nice encounter with a co-worker today had an Amy's gluten-free tamale pie for lunch. Had already cooked it and was moving out of the lunch area and she recognized it. She is a vegitarian and loves the product. In the next few months I will be working closely with this person so it was very helpful for her to "get it" about my needs and understand what happens for me with gluten. Overall, the most positive reaction I've had from anyone outside this forum.

The toaster is a toaster oven which is why I thought a seperate tray would function ok. And what is a toasta bag? Where would I find it?

Susan

[tiffjake]

Welcome!! I have been gluten-free for almost 2 years, and I don't have much to add to what has already been said, except that I would highly recomend a local group. My local group is AMAZING and has really help with finding safe places to eat (because THEY have been there!!) and recipes and such. And my home is 100% gluten-free, and hubby is too (at home, but when we eat out he eats what he wants, and no kissing until he brushes his teeth!). We don't have kids yet, but when we do, they will eat gluten-free at home. But I understand that you have older children, so it would be harder to MAKE them go gluten-free.

Do you have a Whole Foods near you? If so they have a gluten-free products list, and even if you don't buy stuff there, you will have somewhere to start as far as gluten-free options for things like pasta (which, by the way, my fav is Notta Pasta!)

Anyway, welcome!