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- knitty kitty replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4almost a year in recovery - so many questions about to give up
@kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies... -
- Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease12Struggling to get into a good pattern
Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my... -
- trents replied to junell's topic in Related Issues & Disorders1Help!
Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance... -
- junell posted a topic in Related Issues & Disorders1Help!
I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea... -
- cristiana replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease12Struggling to get into a good pattern
I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms...- 1
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By knitty kitty · Posted
@kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat. If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them. The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed. Essential minerals are important, too. Magnesium and Thiamine make life sustaining enzymes together. Blood tests for the B vitamins are notoriously inaccurate. By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely. I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level? Mine was lower than yours. My doctor prescribed the less bioavailable form D2. Our bodies utilize the D3 form better. I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal. Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health. I started feeling better quickly. Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months). Ultraviolet rays from the sun destroy the thiamine in the body. That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces. Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself. We need more Thiamine when we're outdoors in hot weather, working or exercising. Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse. We need more Thiamine when we're physically ill or injured or undergoing medical procedures. We need more Thiamine when we're emotionally stressed or traumatized. Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies. Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C. Some rashes can become worse with exposure to sunlight. The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better. Meats are an excellent source of B vitamins. Sweet potato and plantain are high in carbohydrates. The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist? -
By Rejoicephd · Posted
Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too. Thanks, it's really helpful to talk through this. -
Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
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I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒
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I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would. Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect. At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial. However, within about 18 months there was a return to a very sore stomach, plus various aches and pains. It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better. Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me. Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial. Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while. Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues. For a while, apart from oats, I found peas, lentils and soya products hugely aggravating. Things should calm down.
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