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Very underweight after 5 years gluten free

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Its been 5 years since I was diagnosed. I was treated at the Celiac center at Columbia and I was 17 years old, 5’5 and 97 lbs and that’s exactly what I still am. I was als diagnosed with osteoporosis, b12 deficiency and iron deficiency anemia, and SIBO. I still have all those things except now I also have horrible joint and muscle pain in every part of my body, and even though my weight is the same I FEEL skinnier. I have hip bones that jut out and you can see my ribs and my shoulder bones jut out and it’s just so scary.. I wasn’t careful enough with cross contamination the first few years. It’s been about 6 months now since I’ve been 100% dedicated to eating safely at home (and I have a completely gluten free kitchen) I know it isn’t how I eat. I eat lots of oils, I even put coconut oil in my coffee for the extra calories. Avocados, cheese sometimes if I can handle it, potatoes, meats, gluten free breads... Ive tracked all my calories for the past 6 months to we if I’m just not eating enough and I get between 2000-2500 cal a day! Yet I look like I’m super anorexic or on the verge of death! Diarrhea was never a symptom for me, constipation is. Is this normal!? I’m getting anxiety all the time thinking I must have cancer or something. My thyroid has been checked, I’ve been checked for Addison’s, Lyme disease, all kinds of stuff and nothing comes up, and even my celiac retesting comes out good so I know I’m not still getting gluten. I even had a kid 3 years ago and when I was 9 months pregnant I had only gained 10 lbs then lost 20 a month after giving birth! 

Im self conscious and so scared. Basically I’m just looking to see if this kind of problem is normal. 

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Hi welcome to the forum! :)

When you say you were re-tested, do you mean you had follow-up blood antibody testing, or an endoscopy?

If you had the blood tests, what tests and were the results lower than the original tests?

To be honest, it doesn't sound like you were being serious about keeping gluten out of your diet the first 5 years?  If that is the case, you have really only been gluten-free for the past 6 months.  The celiac disease immune response is activated by very small amounts of gluten, so even tiny amounts of cross contamination each week can keep the reaction going.

While it is  not usual to continue to have major symptoms after 5 years, it does happen sometimes for various reasons.  Generally a person should be over the worst symptoms in 18 to 24 months of being 100% gluten-free.

It's good that you have decided to make a more positive effort in preventing gluten in your diet.  That's the only way to heal your body currently.

One problem we tend to run into is that the longer our guts are inflamed and irritated, the more likely we will develop additional food intolerances.  So you may find some of those have popped up.  Sometimes these additional food intolerances can cause plenty of symptoms themselves.

Some common ones are nightshades, dairy, soy, eggs, corn, oats, and all the other top 8 common food allergens.  So it might help to eliminate all those from your diet for a few months to see if you heal faster.  These additional food intolerances are sometimes temporary and sometimes permanent. 

It can also be helpful to eat a simple diet.  Avoid processed foods and eat mostly food you cook from scratch yourself at home.  Things like meats, nuts, veggies, fruits, are good choices.  Eggs are good if you tolerate them.  Almond milk or anything but soy milk is good as a dairy sub.

Some people like Mission brand corn tortillas as a sub for bread.  Aldi makes gluten-free wraps that are good too.  They are also nightshade free.

I was slow to recover also and still had symptoms at 5 years.  Mine were mostly from additional food intolerances that I developed.   I hope you feel better soon,  An elimination diet can be helpful.

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I have just started putting on weight in the past 2-3months. I was 5'11" and 127lb average for years. Over 5years gluten free before I started gaining weight. 136.2lbs this morning
I am seeing gains recently with a really high fat/protein diet. A big thing for me was having to take digestive enzymes to get nutrients from my foods. I also have to still supplement, B-vitamins, vitamin D, vitamin C, and magnesium. I consume high iron pea protein and seed protein powders with every meal. Iron requires vitamin C to be used.
I go with easy to digest egg dishes with bone broth powder and nut flours blended in cooked into a soft quiche like dish. Riced or powdered veggies and greens in bone broth powder, nut meal porridge etc. When not having dental or digestion issues I also have stews, creamy soups using coconut milk, bone broth, and blended veggies. I found carbs not for me and got my weight up doing more fats and tones of protein. If you have SIBO a low carb Keto/atkins diet helps, just make sure to eat plenty of nut butters etc. I been hooked on sunbutter recently.

IF you have constipation that is a magnesium deficiency sign often, try some Natural Vitality calm, but start off really small doses and up it eacy day 2grams (1/4tsp) til you get loose stools then back down  dosing to tolerance.


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16 minutes ago, Celiacmomma333 said:

That is so helpful. 

What type of digestive enzymes?

Depends on diet I did a coverage of me going trying to find good ones. Kept trying different ones til these newest ones Real Zymes. The company makes different blends depending on your diet. https://www.celiac.com/forums/topic/119919-digestive-enzymes/


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Also, get your thyroid hormone levels checked. Celiac and thyroid disease often go hand in hand. If you have a hyperactive thyroid, it will be difficult to gain weight because all of the systems in your body run too fast. If your B12 deficiency isn't caused by malabsorption due to intestinal damage, hyperthyroidism can cause B12 deficiency because it one of the fuels your thyroid needs to run. But iron anemia can/should improve once the gut heals on a strict gluten-free diet.

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