Gastroparesis And Raynaud's Syndrome

[beachbel]

Hi. I am new to this forum. I was diagnosed with Celiac 1 1/2 years ago and have since been diagnosed with Raynaud's syndrome (cold fingers and feet when exposed to cold because arteries constrict) and Gastroparesis. I am wondering if the two are connected to Celiac disease. I am extremely careful on my diet and avoid cross-contamination. I am still testing positive for Celiac disease. My GI dr thinks I might have the form of Celiac that does not respond to diet. Just wondering if anyone has any similar experience or advice. Thanks in advance.

[ravenwoodglass]

If you are still responding positive while on the diet you may have some gluten sneaking in somewhere. Did your doctor tell you to check all your meds, OTC and script and all supplements? Have you eliminated gluten from your toiletries and all makeup? Are you drinking distilled grain alcohols? For some of us they are safe but for some they are not. The same applies to distilled gluten grain vinagers. Are you living in a gluten free house and does any significant other make sure they brush their teeth after consuming gluten before any kisses? Do you have pets? Feeding pets gluten food can result in problems for us when we pet them or they lick us. Do you eat out? That is risky unless we speak up and are very clear about CC risks. Do you do crafts? Some craft supplies are a risk, like glues and clays for example. If you are have already checked all of the above please forgive the repetition.

I should ask also if your numbers have gone down significantly, for some of us it can take a while before those numbers become low enough to read negative.

Both the gastroparesis and the Raynauds can be linked to celiac. Many times they will be greatly relieved after we have healed.

[Di-gfree]

Just wanted to say that a little over a year ago my digestion came to a screeching halt, and my stomach started to empty very slowly, and stay full for a long time. I just found out I have Hashimoto's Disease (plus I was previously diagnosed with celiac), and I'm thinking the hypothyroidism is the reason for my slow-emptying stomach. So, you might want to investigate that. Not saying you have it, just saying it's a possibility (since you also mentioned the cold extremities (sp?).

[beachbel]

Thanks for the tips. I have not checked all of my make up and am working on that now. Everything else I believe I am doing. I am just wondering if anyone has any helpful ideas on diet until my gastroparesis improves. Even with medication I still have problems. I talked to a dietician who didn't have a lot of ideas since I also have Celiac. I eat mostly fresh fruits, vegies, nuts, and rice. I know some of that is bad for gastroparesis but I have no ideas as to what else to eat.

[ShayFL]

Nuts are VERY hard to digest. You could make almond milk and hazelnut milk which is easy to digest and a good source of nutrition. Raw almonds/hazelnuts must be soaked overnight to get rid of the enzyme inhibitors....pureed with water in a blender and strained.

You want to avoid all grains/legumes and too much fiber. Hard to digest.

Try steaming your veggies rather than eating them raw.

No fried/greasy foods at all.

Take digestive enzymes with every meal.

Dont drink too much water with a meal.

Eat 6 small meals a day and avoid large meals at all costs.

[fedora]

Raynaud's syndrome is linked to Lupus. Have you been tested for that?

[RiceGuy]

The symptoms of Raynaud's Syndrome are a lot like those of certain deficiencies. I'd highly recommend a zinc picolinate supplement, along with magnesium and methylcobalamin (coenzymed vitamin B12). These have helped me greatly in many areas, one of which was intensely cold, painful fingers when exposed to even a little cold.

HTH

[ShayFL]

The Gastroparesis is really a nerve issue. Any supplement that helps the nerves can help. CaEP is a good one (a form of calcium) and Thiamine. If you can find liquid supplements that may be best for now.

Your doctor can inject you with a lot of th B vitamins (or find a holistic doctor who will). This bypasses the digestive process (which you are impaired right now). They can also give you magnesium and others with an IV.

This might just give your body the push it needs to heal.

[beachbel]

Thank you all for the ideas! I was tested for Lupus & thyroid problems and was negative. I will definitely try the vitamin supplements and diet ideas. It is nice to have a direction to go.

[Nancym]

Might want to get checked for diabetes as gasteropareisis is often caused by diabetes.

[Jaimepsalm63]

I have all those too.

I don't have diabetes or hypothyroid. In fact I have a hyperthyroid.

My gastroparesis is to the point of being on liquids only.

I've done the vitamin supplements to help with the Raynaud's....it hasn't but I still keep trying.

I don't know if they are related. My one of my doctors says they aren't. One says he suspects they are, and yet a third says they definitely are related. I don't think doctors always know though and don't really investigate it unless they have a vested interest.

As for diet if you aren't as bad as I am and can handle solids:

Fats (except in liquid form), raw veggies, raw fruits with peels and berries, fiber of any kind are hard to digest and can form the equivalent of a hairball in your stomach.

Easy foods are low in fiber and fat.

Avoid peels of potatoes, apples, peaches, plums...etc. Avoid oranges because the fiber in the orange itself. Stay away from broccoli and artichokes. Don't do over the counter fiber products at all!!

I hope this part helps.

If you find the answer of if they're related, I would love to know. At least you know there is someone else out there with this.

I feel for you as you may start feeling like a lab rat like I do in order to find out everything.

[Cath724]

Does anyone know of any reading material or links to the possible Raynaud-Celiac connection? I've had Raynaud's since I was a teenager, and just diagnosed with Celiac at 33. One book, Celiac Disease, dedicated less than half of a page to it, but that's the first time I've even heard of a connection.

There are two kinds of Raynaud's, primary (meaning it's unrelated to any other condition; basically, it's caused by nothing), and secondary (meaning it's a result of another health condition). I've researched Raynaud's over the years and have often wondered if there really is such a thing as "primary"---Maybe it's always the result of another condition, even when we're not aware we have that other condition (like Celiac). Just my two cents...

[beachbel]

To Jaimepsalm: Sorry you have gastroparesis too. Thanks for the diet tips. I was on just gatorade and rice, but am now doing better. My dr gave me a Rx for domperidone (you can get at compound pharmacies, Canada) combined with Erythromycin. Together, they are working. I also use wristbands for the nasaeu that you can find at pharmacies call Sea Bands (they are meant for motion sickness). I hope you can find something to help you get back on some solid food. The hard part for me, is that with Celiac I was living on nuts, fruits, and vegies and quite enjoying it. I guess I will have to find other things and just be glad I can eat anything. Good luck to you.