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Celiac disease diagnosis

Lochella

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Lochella Newbie
Lochella
Posted

I recently got diagnosed with Celiac disease I must of had it my whole life, in 35 I've always had severe stomach problems in and out of hospitals and misdiagnosed until now. My small intestine is severely damaged in now waiting to see a dietitian and my specialist wants to see me again in 2 weeks. How do some of you deal with the pain of the healing process and what helps you? I'm in so much pain?

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Jmg Mentor
Jmg
Posted

Welcome Lochella :)

Hopefully you can draw some comfort from finally having an answer and thus starting the path to good health. Healing is going to come from your own body as you progress on the gluten free diet and it stops fighting itself and starts repairing that damage. You're still in the very early days and it's not an instant process sadly. 6 months is the usual figure bandied around for seeing significant improvement, although hopefully you'll get some signs of improvement much quicker than that.

The single best thing you can do is to eat good simple whole foods and make sure absolutely no gluten gets into your diet. There's some tips here: 

With stomach pains peppermint tea is my go to drink. Avoiding caffeine seems to help as well as its rough on digestion at the best of times. This may be a time to ease up on alcohol as well and consider dropping dairy, many find they're lactose intolerant but this can correct itself in time. 

You will find lots of good info, advice and support here, I hope the community is of help to you as it was to me. 

Best of luck!

M-SMOOTH Explorer
M-SMOOTH
Posted

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Jmg Mentor
Jmg
Posted
6 minutes ago, M_SMOOTH said:

I feel your pain ? Just diagnosed last week myself 34yrs old and the pain has me in bed most of the day.. would love to here what has helped a lot of u.. Hope u feel better

Welcome too! :)

Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Ennis-TX Grand Master
Ennis-TX
Posted

Going to suggest a whole foods only diet, no process foods or dairy for now til you start healing, Many of us suffer from deficiency issues as mentioned before, common ones are Magnesium, B vitamins, Iron, Vitamin D vitamin d E, folate, the list goes on. I really do suggest starting with magnesium in the form of Doctors Best or Nature Vitality Calm, the doctors best is easier on the stomach while the calm seems to be more effective if you can deal with it (magnesium Citrate is harsh on the stomach and can cause D)  I also suggest a blended supplement for b-vitamins like Liquid health Stress and Energy and the Neurological Support from the same company, 1 tbsp each 2-3 times a day works wonders for energy.   You might have to look into additional supplements you might be low in and for this I suggest talking to a dietician and getting tested to see about your levels.

As for pain and suffering normally you get over the withdrawal and healing starts after 2-6 weeks on a strict gluten-free diet that means no contamination or cheating. I suggest replacing most cooking appliances, cleaning everything, using freezer paper for a prep surfaces, new pans, cooking utensils, and use new liners/organizers in your drawers. Power scrub your oven and run on a cleaning cycle, same with fridge/freezer.  Got to get rid of every crumb and residue there is. I suggest tossing any baking dishes with scratches, cookie sheets, roasting pans and getting new ones. Lining things with foil when cooking helps, New toasters is a must.

When I started out I did so with just a toaster oven, microwave, and combo rice cooker/steamer/crock pot. Did roasted veggies, steamed dishes, stews, and got a bunch of microwave cooking ware like omelette makers, etc so I could cook safe gluten-free meals for myself.  Later I slowly got new pots, pans baking supplies, utensils etc.

M-SMOOTH Explorer
M-SMOOTH
Posted

Well I took test for deficiencies today won't get the results till Tuesday then I can go from there.. road to recovery 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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