[carecare]

I have a niece who I know does not have much money. She has crohns disease and has had it since she's been 14 I think...she's now 19 and has two small children. It's been a long 5- 6 yrs for her. A month ago she went gluten free and is feeling so much better. Then her dr says....oh yes you had some areas in your small intestine back in February that could be indicative of celiac. Yet they never informed her of this. She just kept taking more and more meds all the time. Remicaid caused her to have medication induced lupus about a year or so ago...which landed her in the hospital often. She's now still on other major medications (don't know names of what she's on) but my hope is that it's all due to gluten intolerance/celiac. I have heard great things about enterolab and their testing. I called asking if they had or knew of any program that would help fund the full panel $349 and they didn't and didn't know of any place that did. I know organizations like the MS society helps people out when needed. Is there a Crohns disease society that does the same or a celiac disease society? I can help her fund part of it....her father said he'd pitch in too though he doesn't have much money either. So with that we would be down to $249. I would love to be able to call her up and say the test is taken care of....and have the ability to fund it all for her. Does anyone know of any places that help low income families with medical testing like this?

Thanks in advance for any advice.

cc

[Lisa]

I am sorry that you niece has had such difficulties at such a young age.

Your nieces doctor indicated that she had some documented damage due to Celiac in her intestines. That is enough of a diagnosis for her to go gluten free.

The great part of Celiac Disease is that the prescription is the gluten free diet, and that costs nothing. There are no prescriptione needed or doctors order to begin the diet. If she needs assitance with that we could be more than glad to help.

There is a possiblity that her other ailments may have been due to undiagnosed Celiac. Perhaps with a dedicated diet, those too might enter remission.

There are many chapters of Celiac Support Groups around the country. If you let us know where she's located, we can post the nearest.

A simple diet change, my change her life.

[carecare]

Thankyou. Yes. I suppose if the gluten free is helping there is no need to go for more testing to tell you what is most evident. I just can't believe her doctors didn't inform her more. Did they not think the damage to the small intestines was from celiac? or were they just thinking it was more damage from her crohns. At 14 her crohns was so severe she had imflammation from her esophagas to down all the way through her intestines according to the scope. She missed so much school because of it. Last month I sent all the books I had on gluten free cooking and my shopping guide book to her home. I had talked to her about going gluten free before but I think having the books in hand seeing that you are able to cook gluten free was such a starting point for her.

I was a poster here earlier in the year trying gluten free for my dh. I still think gluten bothers him but with indigestion symptoms but his lower gi issues seem to be linked to peanuts. One thing that went away those few months gluten free was his indigestion....I really should return our household to gluten free again. This forum was such a wonderful support when I was going through changing our diets. I have told my niece about this forum so I hope she joins on in and gets the support she needs. She lives in Upper Michigan...resources are limited. There aren't gluten free stores, restraunts or places for her to buy things that she could use in baking. I know because I was trying to get my BIL on a gluten free diet because of his scoratic arthritis and soriasis. He gave up because it was too hard for him shopping. He didn't have that shopping guide either..which is a must to anyone shopping gluten free I believe. Maybe I should have one sent to him!

Thanks for the advice.
CC

[janetw]

Hello carecare. The Wal-Mart Great Value brand has many items marked gluten-free and some stores carry gluten-free specialty items (flours, bread mixes and such). Also, some of the gluten-free Bob's Red Mill line can usually be found at regular grocery stores.

[Fiddle-Faddle]

You can order practically anything on Amazon for less than most grocery stores charge, and have it delivered to your front door.

It does seem like, with the results of the endoscopy, that there IS a diagnosis of celiac, and the most important thing to do now is a gluten-free diet, which is likely (but not guaranteed) to address ALL problems.

While Crohn's and celiac are two different things, MANY people here were initially misdiagnosed with Crohn's when they actually had celiac.

Also worth noting is that wheat is a no-no for Crohn's, too.

[happygirl]

If she's going to spend her money, she should spend it on the blood testing. Or have another endoscopy. If she has decent insurance, it should be covered (due to her symptoms).

[carecare]

Thanks everyone. Yeah, I remember walmart being a good place to start. I told my BIL and sister to go shopping there too. I think like my niece if you aren't fully prepared to make that change it's hard to make the first steps to do so. So having those cookbooks and that shopping guide was such a help in getting her going. For some if you don't have those things and a dr isn't telling you to change it's all overwhelming and you give up. Well, that was the case with my sister with MS and her husband with scoriasis (and scoratic arthiris). I think I'll continue to bring up gluten free with them. One day they'll listen. Maybe is they see our niece getting so much better they too will get on board.

Anyway, my niece I believe is on state help ...medicare/caid or something like that. Unless her dh has gotten a better job with benefits. I really don't know her healthcare status right now.

I'm going to ask her if she's ever gotten the bloodwork for celiac or not. I thought she had. She's spent so much time in the hospital over the last 5 yrs you'd think they would have done all those tests wouldn't you? Or do some doctors not fully believe gluten intolerance can cause such harm?

Also, I remember talking about enterolab stuff when I was on here earlier in the year. I can't remember what the majority feel about them. My friend used them and had recommended the lab work back when my dh was having his problems. I just thought for my niece it would give her more of a confirmation of what is possibly causing her problems and make her husband and his family believe that the gluten is the issue and be more accomidating to her. What are everyone's thoughts on enterolab's authenticy?

CC

[happygirl]

It does not diagnose Celiac.

If she is on Medicaid - that is health insurance.

[ang1e0251]

I was in a similar financial situation last year when I suspected celiac. I simply went on an elimanation diet & diagnosed myself. She doesn't need test results to tell her what a simple diet can; her health is much improved gluten-free. I personally don't see the need for the testing if you see such a dramatic improvement in your health as I did. If she needs it fine, but she doesn't need a dr's permission to follow the diet. I was in tough straits with money. I didn't buy any of the specialy foods/flours for quite awhile just because I couldn't. But I ate simple foods; meats, vegetables, rice and corn tortillas. I couldn't tolerate much fruit then. Just simple inexpensive foods and I felt great! I have a sweet tooth so I would bake peanut butter cookies that are flour free and PB&J on toasted tortillas. She can do it on a budget if she chooses to. You can help just like you have been with your support and kind words. What a lucky girl to have your support!

[christian.808]

carecare, on Oct 27 2008, 09:40 AM, said:

I have a niece who I know does not have much money. She has crohns disease and has had it since she's been 14 I think...she's now 19 and has two small children. It's been a long 5- 6 yrs for her.

I know that my niece and other relatives that do not have medical insurance, contacted their nearest hospital. They asked them if they have a free/low pay income clinic. two of my relatives were referred to the clinic. Actually, they just had to walk in and make an appointment. I think when they started it was only $35. Then $10 per visit. So go into the the ER and ask if they have this type of clinic or call.



Best of luck for your niece.

[ravenwoodglass]

"A month ago she went gluten free and is feeling so much better. Then her dr says....oh yes you had some areas in your small intestine back in February that could be indicative of celiac. Yet they never informed her of this."

I am so sorry that this has happened to her, that doctor should be slapped upside the head, to put it mildly. Make sure she gets a full copy of the endo report, it sounds like she was already diagnosed but not told of it. I would immediately switch doctors, show the new one the report and get onto the diet. There are only a very few times when I feel a lawyer should be consulted or that a report to the medical association should be made but this is one of them.

[darlindeb25]

Carecare, does she have a Kroger near her. Kroger is very good about gluten-free items, the Kroger near where I used to live even had a huge special diet section. I grew up in Ashley, Michigan, and the Kroger in St' Johns is very good. Meijers probably has gluten free foods also, as does Walmart. Most big grocery chains now carry gluten free foods, we do not have to go searching for the high priced health food stores anymore.

State medicaid is insurance, yet it isn't great insurance. My son is on it. His doctors still haven't tested him for celiac. He was tested for sleep apnea, and has severe apnea. The insurance pays for the sleep study, and a mask, but not for the CPAP machine, which is essential for his health. Medicaid may not pay for a celiac panel.

Are you in Michigan too?

[Rhonda Thorne]

darlindeb25, on Nov 30 2008, 05:20 PM, said:

Carecare, does she have a Kroger near her. Kroger is very good about gluten-free items, the Kroger near where I used to live even had a huge special diet section. I grew up in Ashley, Michigan, and the Kroger in St' Johns is very good. Meijers probably has gluten free foods also, as does Walmart. Most big grocery chains now carry gluten free foods, we do not have to go searching for the high priced health food stores anymore.

State medicaid is insurance, yet it isn't great insurance. My son is on it. His doctors still haven't tested him for celiac. He was tested for sleep apnea, and has severe apnea. The insurance pays for the sleep study, and a mask, but not for the CPAP machine, which is essential for his health. Medicaid may not pay for a celiac panel.

Are you in Michigan too?

no i am in illinois